Wednesday, July 29, 2009

Carefree Days of Youth

I apologize. I am a complainer. About some things. And to some people. But more or less, I really do try to keep as positive an outlook on various goings on in my life as possible.

I also want to clarify another thing about my last post. I do not want to speak for Sweetie regarding what she does or doesn't "get" about my disability. I really don't know how much she understands about me and whether or not she thinks of me as different than other moms in the world. She certainly gets that I need a fair amount of help from her. It's her job to take clean piles of laundry upstairs, saving me the trip. She knows that I'd really rather not come upstairs to check out every little cool thing she's created in her playroom. If no one else is around, I need her to hold my hand and "help" me up ramps/hills/various inclines out in the world (it's actually amazing how much help just holding her hand can be in such situations.) She knows I'd really rather not sit on the floor to play games with her - preferring the couch or kitchen table instead. She knows she has to accommodate me in all similar scenarios because of my weak legs. And she is a great help. Really. She is a good, good girl who will do what she's asked to do without complaint to make my life that much easier. I am, by and large, very impressed with her compassion and understanding when it comes to what I need from her to get through my days.

That being said - and again, I don't mean to be putting words in her mouth, only to surmise what I think may be going on in her mind - I very highly doubt that Sweetie spends much time at all thinking about my differences or difficulties. Maybe even less time (so far) worrying about how I specifically differ from her classmates' and friends' moms. It seems more to me like, whenever I do ask for her help or explain I can't climb the stairs again, my reasons why almost hit her like an "oh, yah" type of thing. And not an "oh, yeah" followed by any feeling of sadness or self pity. Just an "oh, yeah" and moving on.

Anyway, that's how I see it. So when I said what I said to Sweetie at the mall the other day, I feel I forced guilt or sadness or something upon Sweetie with the words I chose. I didn't think I was telling her anything she didn't already know, necessarily. I just was forcing her to think about how my experience differs from hers, and how she is more able than me (or Grammy, currently) to deal with even mildly physical tasks. Which I suppose is not a terrible thing to make her think about, when I think about it. So - s'alright. 

Kind of on the same note - I don't really like when other people tell Sweetie that she needs to help me do something. I'm perfectly capable of asking for help if I need it. No, I try not to complain, but I do ask for help. But, really, most things I feel I can accomplish on my own. If I can do something myself - even if it takes me a little bit longer - I will do it myself. Especially if it's just Sweetie and me. She's a kid. Let her be a kid. Let her not think about "responsible" things too much. Let her get right in the house when we get home and up to her playroom. I'll bring in the things from the car. (Of course, I'll more than likely have her help me initially with such a task, bringing in whatever bags she's able to upon exiting the car. But she doesn't need to help me on return trips. Play! Enjoy! Have fun!) 

And it's not only the "let her be a kid" factor. It's the "I really can do it on my own" factor. Like I said, I'll ask for help when I need it. Otherwise, I'm stubborn. Let me do my thing however I need - or choose - to do it on my own. I can do it. 

Sweetie is as amazing as ever. Energetic, inventive, silly, curious, compassionate... and carefree. She's so caring and helpful, not only with me, but everyone else as well.

I just wish to keep her as carefree as possible for as long as possible. That's not such a bad thing for a mother to want, now, is it?

Monday, July 27, 2009

Mama Monday - Theme: Deal

Yesterday Grammy took Sweetie & me to the mall for some school clothes shopping.

Grammy broke her foot about a month ago and so is hobbling around with a walking cast on one foot.

I'm hobbling around... well, you know... because that's what I do.

Sweetie... healthy, active, full of energy from sun up to sun down Sweetie... complained a lot about her feet hurting and just being plain tired of walking. A few times even throwing herself down on the floor in exhaustion whenever Grammy and/or I stopped to look through the clothes racks.

Granted, I an not a shopper. At all. Therefore, Sweetie has really not been exposed to "mall going" before. Walking from store to store, trying clothes on, etc. If we shop, we go to one store, see what's on the racks, then either buy something or not. Quick and easy.

Still, we hardly did the typical "shop til you drop" thing. We went to two stores. That's it. Really no big deal. I was definitely in some discomfort myself and had to sit down once to rest. But it was okay.

So when Sweetie complained for about the 20th time or so, I had really had enough. As Grammy stood in the check out line to get our last purchase, I stood off to the side with Sweetie and spoke to her.

(Sweetie), it takes a lot of effort for me to do all the walking we've done today. It's very hard for me to walk at all. You are healthy. You can walk. You don't get to complain about walking. You get that?

To which Sweetie quietly answered - Yes.

And I felt awful. I just used my disability as a means to get Sweetie to buck up and deal with her own - valid-for-a-6-year-old - aches and pains. It was, honestly, the first time I had ever
complained to Sweetie - or pretty much anyone, really - that "Hey, it's really hard for me to get around."

I don't complain. I certainly take my time. I ask Hubby, Sweetie, or whomever I'm with to
slow down and wait for me. I ask for assistance up and down stairs or inclines. I sometimes let people do the walking for me if that's an option. I tell people when I have to sit down and rest for a minute. But I don't complain. I just do what I need to do to get through the store/hike/
whatever as comfortably as possible, and that's it.

Hubby occasionally will limp along and moan about a sore joint or two.

Sweetie has complained from time to time about being tired.

But I just keep on going.

Whenever my face does show my pains or Hubby can just tell that I've pushed myself to the limit, he tells me to stop playing the martyr and sit down already! But I'm not trying to be a martyr. I just recognize that saying how I'm feeling to whomever I'm with is not going to change anything about the pain or discomfort or fatigue that I have. Let's just keep on moving, then we'll be done and I can rest all that much sooner.

But yesterday, I did it. I played the disability card. On my 6 year old. I placed my disability burden on her young shoulders. And not even by out-and-out complaining about my experience, but telling her - because of my experience - she's not allowed to complain for herself. Wow.

I have not really directly talked to Sweetie about my disability. I've tried to. I know I've talked about how my braces and walking stick help me. She knows my legs aren't as strong as hers. But we just don't talk about spina bifida as such. If she heard me use the words "spina bifida" in conversation, she would either remember that "that's what makes mommy have to wear braces on her legs" or she'd ask me again to tell me what those words mean (it's what makes me have to wear braces on my legs). She has no real sense that there's anything "wrong" with me. Different, sure. But not wrong. As I've mentioned here many times before, I'm just Mommy. All that makes me "me" makes me the Mommy that Ella knows, loves, and feels comforted by. My experiences with spina bifida certainly play a part in who I am, but my individual experiences don't mean a hoot to Sweetie.

So for me to deliberately point out what's wrong with me, what's difficult for me, what's a big challenge for me, and tell Sweetie she's got no right to complain herself because of all that I deal with.... Well. I just feel awful.

In talking to Hubby about this, he said that no one has the right to complain about something when they're in the company of someone who is dealing with the same complaint on a larger scale. No one has the right to complain about their hurt foot in the company of his mom. He doesn't have the right to complain about his aching back in my company (although he does... boy, does he have aches and pains he's forever telling me about!). It's just a matter of politeness that everyone has to learn in life. Telling Sweetie what I told her is okay.

And I see his point. I know he's right. But still. As the words were coming out of my mouth, and Sweetie responded as quietly and somberly as she did, I regretted the manner in which I chose, in that moment, to get her to buck up and... deal.

Friday, July 24, 2009

This Is A Test of Your Public Broadcasting System...

This past Monday I did one of the most exciting things I've been asked to do as a direct result of my blog. I sat in on a forum set up by our local PBS station (WGBH out of Boston) regarding, specifically, Super Why! and, generally, how we as parents monitor (or don't monitor) what our kids are viewing on T.V. or being exposed to on the internet.

It was a fabulous luncheon where I honestly felt a teensy bit star-struck, not only because I got to meet a couple bloggers I've enjoyed reading for some time now (and some even introduced themselves to me as readers of my stuff!), but because I found myself in the presence of Curious George, Martha from Martha Speaks, and Between the Lions' very only girl-cub, Leona.

How very, very exciting!

(And how very, very impressive that - when I told Sweetie I'd be going to this event and meeting these characters - she hardly bat an eyelash begging permission for her to come along {which she really could have, pretty easily}, but rather got excited along with me and asked me to please take pictures while I was there so she could see her favorite "friends".)

Super Why!'s creator, Angela Santomero, spoke to us (a gathering of 20-30 mom's who blog) about the impressive amount of research that goes into each and every episode of the show. From early storyboard books read to kids in the Tri-state area, to bare-bones animated video productions tested on even larger groups of kids, nothing is spared in making sure that each new Super Why! adventure not only captures the attention and imagination of the children watching, but also teaches them important letter recognition and word-building skills. Skills kids can use directly along with the show as well as in conjunction with the literacy learning they're getting at home and in other educational settings.

In fact, every PBS childrens' program undergoes its own degree of research before airing. PBS's first question, when creating an education show for kids, is "What do kids need?" Nothing is produced without the kids' learning needs in mind as well as the parents' concerns. PBS does not insist that parents expose their kids to this programming, but feel that - if we as parents do wish to present T.V. watching as a valid option to our kids - they want to give us the most responsible and educationally worthwhile shows they possibly can.

Back to Super Why specifically, I was impressed to learn that Super Why! Reading Camps are offered to Title One communities all over the country. Week-long programs with each day focusing on a different step in the letter recognition and reading process. Camps that have proven themselves extremely effective - raising the attendees' proficiency in each of the 6 steps to reading fluency (Letter Naming, Letter Identification, Word Decoding, Letter Sounds, Encoding and Reading Words) anywhere from 4% to 181%! Wow! As a mom I am really impressed. As a reading tutor, I am amazed! Hurray to programming that really works!

As for Sweetie herself, she's pretty much past the Super Why! era. She'll watch new episodes (about 20 per season) once or maybe twice, but long-standing reruns she'll skip entirely (whereas she'll happily watch the same episodes of Word Girl, Martha Speaks or Fetch with Ruff Ruffman 20 times in a row!) Since Sweetie's already a proficient reader at 6 1/2 years old, letter recognition and singing the alphabet song (even Super Why's catchy little version) is rather old news in her book. But I can vouch for how much Sweetie used to watch it and how far it really did help her in increasing her interest in learning to read when she was first stretching those skills.

As for all the Super Why! specific swag I brought home - worksheets and activities for Sweetie to work on over a week's time (said the PBS representatives) - Sweetie was done with one whole packet in no more than 15 minutes. (A week! Yeah, right!) However she is still having fun and taking her time on other fun worksheets I brought home from the event (and still not complaints that she couldn't come with me. Wow!)

As for monitoring what Sweetie can and cannot watch on T.V. - Hubby and I pretty much have to like the show first before we will allow it. Secondly - we have such utterly basic cable that the only children's programming Sweetie really has available to her is PBS programming. And after getting a good look at the behind the scenes action of not only Super Why! but lots others of Sweetie's favorite shows, I have more faith and good feelings than ever with her watching just about any shows that strike her fancy on our public broadcasting channels.

Thank you, WGBH, for an informative and fun day. I learned a lot - just as I know my daughter is learning so much every time she turns the TV to your channels.

Thursday, July 23, 2009


In playing around on Facebook, I've encountered quite a few quizzes that ask some form of the question "when did you start to feel old?"

This year. This has been a heck of a year. This year I feel old.

Hubby and I are celebrating our 10th wedding anniversary this year.

My niece is getting married this year.

And this year's birthday was the first birthday of my life that I was not looking forward to acknowledging.

Happy, happy, joy, joy.

This year's birthday (observed about 2 months ago) was a difficult one for me. I'd reached an age I deemed as "old". Of course, I'm the youngest in my family and I generally feel like the true baby of the family that I am whenever I'm around them. But still - my birthday marked the passing of a great many years, in my eyes, and I did not relish in it.

But when all's said and done - who cares about any given number? It's just a number, right? You are only as old as you feel. And how old you feel plays in a great deal to how old you look. Well, I've always looked much younger than I actually am (I once was given the children's menu at Friendly's when I was 18 years old!). And, frankly, I've pretty much always hated looking so much younger than I am. But nowadays - well, I'm appreciating it more and more.

Except for now - this "old" year - I began to see age (sun?) spots and smile wrinkles appear on my face as the sun's intensity increased with the change of seasons... time for the age defying creams and eye gels!

Well, okay.... but now I see age spots on the backs of my hands. Age spots! My mom and grandmothers have age spots! I do not want age spots!!!!

So... the look of youth is fading just a little. I still feel pretty young....

... or not.

I have become increasing sore. Very, very sore. 

Sore shoulders. As pained a lower back as ever - more so, perhaps. Sore arms. Sore legs. The inability to walk long distances (I mean, long distances for me... which have never been that long in the first place.) Much slower and belabored steps to climb up to our house's second floor. Just. Plain. Pain.

It makes me wonder if I'm more sore because I'm not moving around as much as I was when I worked in an office... or because I am now moving around more. What to do? Deliberately exercise more, or chill out a bit more and ask for even more help from Sweetie & Hubby than I already do?

I admit to not exercising. I guess I figure that the mere act of getting around has always been a bit of a workout for me in the first place. I don't need to actually set aside time to exercise when life in general is one big workout session for me, right? Hmmph... 

Anyway, we're working on the house big time these days, getting it sell-ready. We still need to move for financial reasons - too much in mortgage payments going out & way not enough money coming in. And we've always included the fact that this house is too much house for us in our decision to move as well. But now, to me, that fact is not just a secondary problem. We need to move for lots of reasons - not least of which is my increasing inability to get around this old, 2-story farmhouse. 

Yes, you are only as old as you feel and age is but a number. But this year seems to have kicked my butt & I am truly feeling...


Tuesday, July 07, 2009

Wow! Someone Really Is Listening Out There!

As we all know, I started this blog some years back as a means for other women, and men, with spina bifida to find at least some information on what it meant to be a parent with the disability going through a pregnancy and raising a child. As we also know, there was precious little to no information like this at all available for myself and my husband to find when we were setting out on our journey through pregnancy and parenthood. No one, nothing out there to answer any of our key questions. Questions like:

• Would I be able to walk throughout my entire pregnancy, or would I require a wheelchair by my third trimester - or before?

• Would my already weakened legs and overly curved spine even allow me to carry a baby to term?

• Given my decreased sensation, would I be able to detect when I went into labor?

• Assuming that I could handle a pregnancy, would I be able to have a natural birth, or would I have to have a C-section?

• What were the chances that our baby would also have spina bifida - or any other birth defect, for that matter, given that I have spina bifida myself?

Then, beyond the actual pregnancy and birth - then what? Where could we find some information - maybe some first hand accounts? - of families with one parent having spina bifida and successfully getting through the day to day joys and challenges of raising a child? How to handle such things as mobility issues, for example? Wasn't there anyone out there who we could learn from?

No. There wasn't. And now, through the many people I've heard from through my blog, I'm saddened to know that there still is a gaping lack of knowledge available for the disabled adult wishing to start a family. 

Until now.

DPPi, the UK based information charity on disability and pregnancy, is spearheading a 3 part project entitled the Empowering Parents Initiative. The first part of the project has already been realized - a full report published in June 2009 entitled The Maternity Information Gap for Physically Disabled People

What? Really? You mean an organization actually took the time to find out why there's such a lack of information for adults with disabilities (both physical and mental) wanting to start a family? And what sort of information and resources these adults would have liked to have been available to them? With an aim towards having said resources available for others in the future? I am speechless... utterly speechless and very impressed. 

You can read the full report here

The second and third parts of this project's aim is to produce two guides for physically disabled parents to be published later this fall. I am thrilled to be part of the Steering Group for these upcoming guidebooks, getting a chance to contribute my own ideas on what is necessary and not so necessary to include in its pages and simply to make sure what's produced is the best information out there for expecting (and expecting to expect) parents to absorb.

Finally! A wonderful organization has made it a priority to help adults with disabilities in this most fundamental way. Bravo, DPPi! You are truly amazing, courageous and - as Sweetie would say - GREAT! I am proud to be associated with you in even the most broadest of terms. Can't wait to see what you come up with next!