Friday, October 7, 2011

To leash or not to leash, is there even a question?

I was on my favorite parenting message board the other day when a topic came up about tethering your child, or putting your child on a lease like this one:

Some were of the opinion that tethering your child like this is inhumane because it makes them feel like an animal to be dragged about.  They are entitled to their opinion for sure.  But I'd like to send out a generic, to-the-world other-perspective.

I think there are many that have had 'that' child - the 'bolt-er', the 'stubborn independent', the 'escape artist', the 'too friendly for their own good.'  And no matter how well you think you're watching them, almost every parent has had that sickening realization that their child has either disappeared somewhere, even if its for a minute, or headed towards that busy street or parking lot.  I've experienced such an emotion.  And it was only magnified by the knowledge that there was absolute nothing I could do about it.  Because no matter how fast I pushed my chair, I was not going to get to my child in time.  And quite literally my 'bolt-er's life was saved by the fact that I had my sister with me.  She was able to run and snatch her up as her little foot took its first step off the curb as a car was going too fast through a mall parking lot.  I've never been so scared, nauseated, helpless, angry, and disabled as I was at that moment.

I honestly don't remember how I found that little doggy backpack.  I don't remember if it was a gift or if I just saw it at Wally Big Box and the light bulb flared over my head.  My daughter hated it.  She would throw fits when I put Puppy on her.  And for the next little while it really did feel like I was dragging around a puppy on a leash.  She would flop herself on the ground, or she'd start out walking on one side and then stop, run behind me and then try to walk on the other side, making me have to loop the tether up over my head and grab the loop with my other hand.  Or she'd take off running and quickly find her feet out from under her as she crashed to the floor and occasionally bang her little head on my chair.  I know I got quite a few disapproving stares from people at the store or mall.  But despite the learning curve for me and her, and definitely despite my confirming the nay-sayer's opinion on tethering, I knew I was doing the right thing for my child.  I wouldn't have to worry about losing her and I would not have to worry about her dying in front of me because I couldn't catch up to her.

She got used to it eventually.  And as she got a bit older, we did a few trial runs without Puppy.  She would prove that she could walk near me without running off and eventually Puppy was no longer needed.  I attribute this to the tethering.  The physical restraint in combination with verbal reinforcement to obey my life-saving/sanity-saving commands like Stop, Come Back or Slow Down helped my daughter to learn how to stay in my visual proximity, for my peace of mind, while allowing her the independence she craved.

It made transitioning from one toddler to two so much more smooth as well.  And I quickly realized that it was something even more needed when I had that extra child to keep track of.  It took him a bit longer to get to the trusted "leash-free" status, but now I get a lot of compliments on how well my children stay near me. Its like any other parenting tool - its there for the short time its needed to help our children be the best they can be.

Wednesday, September 21, 2011

Bless Your Heart!

Its inevitable.  If you have spent any time at all, permanently or not,  in a wheelchair or on crutches or a walker, have pretty much any visible impairment and you know exactly who I'm talking about.  You're going along pushing yourself down the aisle at the grocery store, or making your way up a ramp, or going through a door, you'll hear that phrase "Bless your heart!" chimed from behind you and suddenly feel that sudden jolt of momentum forward or the cart or basket whipped out of your hands or shoved out of the way so they can get a door open for you.  Its the well-intentioned person that perceived a need and then decided to act with charitable kindness in behalf of a less-fortunate.  In my experience this situation is compounded exponentially when you become a parent.

Its frustrating, really.  I am probably one of the most independent people you'll meet.  Probably to a fault.  I've always tried to find ways to do it myself and when I added children to my life, the challenge of finding ways to manage them and my chair became paramount.  And I figure for the most part I've done a pretty good job.  Dealing with those stupid car carriers for infants is something I'm particularly proud of.  I balance the carrier on my dominant leg while I hold the handle with one hand.  I then use my other hand to propel one wheel forward.  Then I quickly switch hands on the handle and push forward on my other wheel with my other hand.  Once I gain a fair amount of momentum, its easy peasy lemon squeezy as my daughter says.  It looks terribly awkward.  Thus it become a magnet for the well-intentioned.  The other day as I was heading into our local Wally-big-box store to get some things, I had almost made it across to the front doors when I heard the familiarly grating sound of "Bless your heart!".  Promptly, my child in his carrier was taken from off my lap, carried into the store, and put in a cart all before I could say "Hey!"  The woman beamed with pride as I and my other children caught up to her.  I just didn't have the heart to scold her with so much well-intentioned-ness exuding from  her.  I just mumbled a thanks and took control of the cart.  But I couldn't help but think that if something like that had happened to an able-bodied person, the woman could very well be leaving Wally-big-box in handcuffs for attempted child abduction.  But how to explain that to a person without delving into a long, bitter-sounding diatribe that I would appreciate being asked first, like anyone else.

To be fair, a good number of people I've come across do ask first.  Its probably one of the only reasons that when the well-intentioned do ask, I have a really hard time telling them "no".  I, when I had only two children to deal with instead of three, had gone to a different Wall-big-box to get some much needed grocery shopping done.  A full basket is usually not an issue when you've got a very well-trained three year old at your side and the nine-month-old sitting peacefully in his car carrier on top of the basket.  But it had dumped quite a bit of snow the night before.  Wally-big-box, in their infinitely cheap wisdom, decided it wasn't important to plow their parking lot.  Its so huge and that would be expensive.  And to add insult to injury, it had dumped quite a bit more snow, wet snow, while I was in the store.  Wet snow + full grocery basket + wheelchair = big problem.  I sat there staring at my van only 30 feet from me.  It might as well have been across the Grand Canyon.  I guess I looked pretty pathetic because I heard "Bless your heart!" chime from in front of me.  It was an older couple who were heading in from the blizzard to the store.  They asked me if I could use some help and what could I say?  I knew I wasn't getting across the frozen slush pile by myself.  In no time I found myself and my kids neatly packed up in my car with the groceries in the back.  And before they left they said "God bless you, honey."  And I immediately said back to them, "He already did."

Tuesday, July 19, 2011

Children Are Amazing!

Our children are amazing.  It seems such a generalized statement but in my 6+ years as a mother, watching my children grow and develop, they never cease to confirm this for me.  And I think there is something extra special when it comes to children who are born to parents with disabilities.  There has to be some innate ability for them to adapt to the needs of their parents.

The first time I started to suspect this was true was with my oldest child.  She was four months old when I realized that she was amazingly adept at balancing on my leg.  It was always easier to maneuver my wheelchair one handed if she sat on just one leg.  But where other babies would throw their arms out as if in a panic they would fall, she only held her arms out as if to stabilize herself.  Obviously, this was still with my arm around her but there was a subtle difference in the way she sat there and the way other children who weren't mine did.  And in case you thought this might very well be coincidental, my now two month old son will actually wrap his legs around my leg for further stabilization.

She also seemed to do everything a tad early too.  I guess this could also be attributed to oldest-child syndrome as well, but she crawled early, walked early.  For a child who's primary care parent couldn't show by example how to use those little legs, she sure did figure out pretty fast how to put one foot in front of the other.

The latest example of this has only come about because of my pregnancy.  There really was no changes in the way I got my wheelchair in and out of my car until around my sixth month.  Then my belly really got in the way.  And then all of a sudden the aerobatics I was performing to get from the middle seat to the front seat of my van were suddenly not an option.  And I had a child to get to school in the morning and a carpool partner that depended on me in the afternoons.  I couldn't have any of the adults in my life be there for me all the time.  What were my alternatives?  My daughter was 5 almost 6.  I knew she didn't have the physical strength to pick up my wheelchair and put it in the car for me, right?  A solution presented itself as I mulled over my problem with an experiment.

With me sitting the front passenger side of the van, I propped the front wheels of my chair onto the car floor and then had my daughter stand at the back of my  chair and push while I pulled the front end.  Neatly, the chair was pulled into the van and my daughter hopped into the car behind it and closed the van door.  Problem solved and more neatly than I had anticipated.  And its worked well.  I do this on my own now again, now that I'm not pregnant anymore but even then sometimes she and now my four year old will still volunteer to help mom out.  They are truly amazing.

Tuesday, April 19, 2011

Do Your Homework!

I had a conversation with a midwife last week that inspired this post.  I think before I get started that I should throw out a little disclaimer.  I don't care how your baby comes into this world, as long as the baby comes out kicking and screaming their little head off, and as long as mom is safe and happy to be a mom.  Which means I support and encourage you to have a vaginal, un-medicated birth just as much as an induction with an epidural or repeat c-sections as long as its medically indicated and it's the wish of the mother.  No one has the right to make you feel bad or guilty for your decision on how your child came into this world.  And nothing is more important than educating yourself on the various ways possible so you can make the most informed decision possible to have the best birth experience possible.

So back to the midwife and I's conversation.  I thought the intent of the conversation we were to have was about educating herself more about women with disabilities and pregnancy.  Just as every able-bodied woman is different, so, too, is every woman with a disability different and their disabilities make their birth experiences vastly different as well.  At first I was pleased to find out that she had actually had two patients with varying degrees of disability.  Its rare to find practitioners that have actually worked with a woman with a disability through her pregnancy.  I thought she was getting a different perspective on a disability type she hadn't worked with before.  Her first question was about how I had given birth to my first.  I told her that I had had an induction at 39 weeks, and that she had never engaged in my pelvis, went into distress and that had ultimately led to an emergency c-section.  Then she asked if I had my son by c-section as well.  I told her I had, at which point she went into a tirade about the evil medical establishment and how I could have had a VBAC (Vaginal Delivery After C-Section) but doctors were too worried about lining their pocket books instead of doing what was best for me.  I got a little upset at this point, though I tried very hard to be as polite as I could about it.  She didn't know me from Adam and I was a little miffed that she forgot to do a very important thing before she went off on her tangent - she forgot to ask me if my second c-section had been medically warranted and if I had done any of my own research.

Because despite her good but intrusive intentions, I had done my homework.  In fact, I had done a lot of it after my daughter was born and was pregnant with my son.  I'll be honest - I felt a bit cheated of my wanted birth experience after my c-section.  People automatically assumed that I had had my c-section because I was in a wheelchair and not because of an emergency.  I was supposed to prove that despite my disability, I could give birth to children vaginally.  One of the first things I learned when I was pregnant with my daughter was that the uterus is an automatic muscle.  Its gonna do what its gonna do (ie.push out the baby) whether I help it or not.  So even though I don't have a lot of the strength down there that other women do, I should have still been able to push a baby out, thus showing everyone that women with disabilities do have babies the 'normal' way.  It didn't matter that she never came down past a -2 station even after being in active labor for more than 10 hours.  I still felt like a failure.

So with my son, I wanted to ensure as much as possible I would not have another c-section, if I could help it.  That's when I really started to hit the internet as well as having lengthy conversations with Judi Rogers, the pregnancy and childbirth specialist at the Through the Looking Glass organization, a resource for parents with disabilities among other things.  She helped me understand VBAC and encouraged me to pursue this despite my doctor and husband's trepidation.  But I don't just do stuff because it sounds good.  My doctor had warned me that he felt my pelvis was too small.  So I got a second opinion.  I went to another OBGYN to get his opinion.  He, too, said he felt my pelvis too small for a safe vaginal delivery.  The straw that broke my proverbial camel's back was a perinatologist I was already seeing that told me the same thing, but told me why.  During puberty a woman's hips spread.  But with women who were paralyzed and using a wheelchair full-time before puberty find that their hips do not, or at least not as much as if they had been able-bodied.  The truth was my pelvis never shaped themselves to allow a baby to come through - boy-shaped, he called them.  Devastated as I was, it was still good to know the 'why' even if having another c-section was something I did not want to do.

If this midwife had really be interested in my story, she would have found all this out first before assuming that I had just let my doctor lead me about by my nose.  And by the end of the conversation, I knew that all she was interested in doing was preaching to me about the evils of modern medicine.  I knew this because I tried to give her more information about Judi Rogers and Through the Looking Glass, but she really wasn't interested.  You'd think she would be interested, considering Judi has been compiling birth and pregnancy information for women of all types of disabilities for nearly 20 years, and its this midwife's life's work to educate the ignorant about VBAC. This information would be especially useful if she were to work with other women with disabilities in the future.

This conversation reminded me about how so very important it is to be educated, especially about your body.  If I were to be asked any advice about this topic at all, I would say immediately to be your own advocate.  If something doesn't sound right to you, find out why!  Doctors are not evil, nor are every one of them out to line their pocketbooks or schedule procedures to suit their convenience (though they are out there).  A lot of them do not have a lot of experience with disability and pregnancy.  So they may be running under out-dated misconceptions or be ignorant.  There are places to find out more information, and certainly if you find a physician who is willing to either work with you or find out for himself, so much the better.

Thursday, April 14, 2011

The Calm Before the Storm

As I'm sitting here typing, my house is pretty quiet.  My daughter is in school, and my son is entertaining himself with my husband's iPhone.  With my due date coming up in less than 60 days, I've started to really appreciate these times.  They won't be lasting too much longer.  Its been almost four years since we've had a newborn in the house.  Things have fallen into a crazy, wonderful routine since then and I think before my husband and I decided to get pregnant again, we were taking that for granted.  Now that part of me that really, really enjoys that routine is sort of freaking out.

Logically, part of me understands that this time around with an infant will be far more easy than it was when my son was an infant.  My two oldest are old enough to take orders, comprehend and execute (hopefully) without too much fuss.  But when my son was born, my daughter was only 2 years old.  And while she enjoyed loving on the baby and she'd occasionally get me a diaper, I felt like my time was spent chasing after her as much as it was being responsible for my son's needs.  It was one of the reasons I decided to stop breastfeeding him, though we didn't have many problems with his latching.  When you're sitting on your couch breastfeeding, and your daughter decides to start climbing the kitchen counters like Mount Everest, you can't just stand up with baby still attached and get her down.  You have two choices - you either let her continue climbing and possibly seriously injuring or killing herself while your son peacefully nurses, or you put the baby in his bouncy seat, or on the floor or in his playpen, screaming because he's not done, while you transfer yourself to your chair and make sure your child doesn't harm herself.  The bottle was really the reason my daughter is alive today.  With this current baby in utero, it gives me pause to think about what challenges his coming into the family will pose.

Regardless of my nervousness, I know I'm a bit better prepared for a lot of the eventualities that comes with a newborn that I wasn't with my other two.  For one - I learned a little late for it to be useful with Isaac about a contraption called the Moby Wrap.  With two kids to deal with and the absolute necessity of needing both my hands free, this will definitely be a life saver.  And its not just the hands-free aspect that is appealing.  Those darn cheap baby carriers don't work for me.  They were designed to hang properly when you're standing up.  So when it sits in your lap, its way too loose for it to hold the baby securely enough when you're pushing a chair.  Heck, half the time, people using those types of carriers are using one hand to hold the baby against them so the head doesn't flop around when they're walking anyway.  The Moby Wrap holds that little, tiny, floppy being right to your body - no flopping and no feeling like if you bend over they are going to fall out.  Its a Godsend for sure.

SNIGLAR Crib  Length: 53 7/8 " Width: 29 1/8 " Height: 33 1/8 " Bed width: 27 1/2 " Bed length: 52 "  Length: 137 cm Width: 74 cm Height: 84 cm Bed width: 70 cm Bed length: 132 cm  Another fabulous find this time around was this crib I found at IKEA.  Heaven bless those Scandinavians for making short cribs.  This crib is the perfect height for me to put baby in and out without either having saw the legs off the crib or me feeling like I'm just dropping baby in!  Its nothing fancy but it definitely will work for me.

And the last thing that will definitely make life a little easier for an infant and a wheelchair is this swing.  The leg's wide base makes it easy for my chair to roll close enough to it that when I put baby in it, my center of gravity is still pretty solid, even leaning over a bit.  The height of the chair is also perfect for that same reason.

The Boy Scout's motto is "Be prepared."  I think I'm about prepared as I'm going to be.  As much as any mother can be whether its your first baby or your third like me.  Now how to deal with sibling rivalry?

Sunday, April 3, 2011


I am not a perfect mother.  My kids can be brats.  I sometimes yell too much.  My house looks like a tornado hit it almost every single day.  So this won't be a blog solely about those precious moments you see on Mother's Day commercials with a beautifully coiffed woman snuggling her cooing baby to her.  Motherhood is messy and wonderful at the same time.  Then add a wheelchair to the mix.

I'm a full-time manual wheelchair user.  I have been since I was two and a half.  My awesome parents always encouraged me to do what I could do - which I did.  I wasn't a sports star.  I didn't break any records or discover new ways of doing things.  I just lived my life as best as I could and didn't let people tell me I couldn't do something.  I went to regular schools.  I went to college for a while.  I had jobs.  Then I met my husband and a year later we decided we were going to try to have a baby.

And thus my odyssey began.  I didn't see doctors very often at that point in my life.  I saw them a lot when I was little and my disability was new.  But after a certain time, my parents and I were sick of the constant round of doctors and physical therapist appointments that were only accomplishing the maintenance of my muscles but offering no hope of my walking ever again.  Plus, in the late 70s, so very little advancements had been made in the realm of physical rehabilitation, let alone information available to doctors and parents about how disabilities and spinal cord injuries affected the daily lives of people, that my parents and I just dealt with what we were given and didn't keep up with the disability community or advancements in physical medicine.  The few doctors my parents had approached about whether or not I would be able to bear children could only shrug their shoulders.

Time marched on and like any other young women, I started menstruating in my early teens.  Both my mom and I took it as a sign that something was working down there, but in the back of our minds there was always doubt.  And the doubt became concern when my husband and I were still not pregnant after trying for a year.  We were almost at the point of trying infertility treatments when that wonderfully pink second line showed up on the pregnancy test.

I don't think for this post I'll go into my pregnancies because I could seriously write a whole book by itself about that.  But suffice to say, that both pregnancy and motherhood have been a very rude awakening to someone who has always lived her life as if she weren't disabled.  The only way I can explain it is like being disabled all over again.  Your paradigm has to shift.  You cannot do things they way did them before.  So as a result you have to figure out new ways of doing almost everything.  The one positive among what could seem like a whole slew of negatives is that you have this gorgeous child that is your very own.  And they do one thing that sometimes seems so very hard to find from people if you have a disability - they love you unconditionally.  Your child doesn't know you have a disability (well, at least not until later anyway).  They don't care if your legs don't work or your eyes don't see, or your ears don't hear.  They depend and love you just the same as if you were able-bodied.  And they grow and adjust right along with you.

I've been a mother for six years now, or seven if you count the nine months I was pregnant with my oldest.  I've learned so much in that time, and I've got a lot more learning to do.  I have two awesome kids and expecting my third soon.  I'm very aware that life is about to get super crazy.  Probably even more crazy than I thought it would be, with a school-ager, a pre-schooler and an infant.  I think this blog is an attempt to find the funny in all the craziness.  Because really, eventually its all going to be funny to me.  Life goes by so fast, and I'm starting to learn that my kids are growing up way too fast for my liking.  So why not document how this all plays out and maybe learn something in the process.