Little's Life

Little's Life

Saturday, May 11, 2013

I Can do it Myself

There is a time in a toddler's life when he or she decides for themselves that are ready to be a "big kid".  They start trying to figure out the mechanics of pulling their shoes off of their feet and pulling the lids off of their sippy cups so they can flood the kitchen, I mean fill their own cup up at the refrigerator door.  They start screeching "No, Mama!  I do it myself!" multiple times a day while simultaneously shredding the tissue and swatting away your arm that was outstretched to wipe that runny nose.  According to What to Expect: the Toddler Years (oh yes, the book series stretches out beyond just pregnancy), this phase usually sets in around the 29 month age (so, 2 years and 5 months for the mathematically challenged).  This is around the same time that tykes start feeling confident and capable in their own abilities to do the things you have always done for them.  In fact, they feel overconfident - I'd say more like superheroes; brave and full of pride.  They do things like scaling the countertop to get their own bowl for cereal and run into the living room with the butcher knife because that banana you usually slice for them each morning?  Well they "doo'd it demselfs". 

Not my son.  In one of his evaluations last December, a PT told me he was "very aware of his own limitations" and that he was protective of himself in the way of refusing to perform tasks that could potentially harm him.  *He was refusing to climb (crawl) down a set of therapy steps at the time.  She called it self-preservation.  This was not a dig at my overprotectiveness or meant in any kind of negative way whatsoever.  In fact, she sounded kind of impressed at how self aware he was and she told me it was great that he had developed that sense about himself so early on.  I know it doesn't sound like such a desirable trait for a toddler, but when a broken leg could send you to a wheelchair by the age of 6 instead of 12 - then trust me, it is. 

Little's "help me do it" attitude has not just been in the aide of physical feats, like climbing stairs or jumping on the couch, but it in all aspects of his life.  He has been perfectly content having me and Mister do even the simplest tasks that are considered self-help.  I could encourage him, full on cheerleader style to go pull his own wet wipe out of canister himself so we can clean up the spilled oatmeal, but all I would get back is "I can't!  Not by myself!"  No sense of Hmmmmm,-maybe-this-is-something-I-should-try-for-myself seemed to be in there at all. 

Do you want to brush your teeth?  No, Mommy do it.
Can you try to pull your socks off?  No, it's too hard!
Now you try to pull your pants up.  No!  Youuuuuuuuu!
Do you want to check the mail with me?  Yes!  Ok, come on.  No!  Hold me, Daddy!!!

I know some of you are thinking "Well she just does too much for him.  She should just make him do things himself."  Well I'm betting those of you thinking that don't have a child with a muscle disorder. Yes, I do a lot for him.  Yes, I am keenly aware of the things he cannot or should not do for himself due to the dangers.  So I do step in where I need to.  But I *don't* just autopilot everything for him.  I try and try and encourage and use that stupid singsongy voice while grinning ear to ear and chanting "You can do it!  Just try!" 3000 times a day.  I try to get him to do everything from undoing the Velcro on his monster shoes to singing "Brushabrushabrusha" from Grease while handing him his toothbrush to squealing and clapping like a lunatic every time he shows initiative.  Do you seriously think I want to have to get up and do every little thing he needs for him?  Do you think I don't want to just sit on the couch and breathe for 5 minutes uninterrupted by neediness?  Do you have any idea how long it has taken me to type this much of this blog post out?  I've been up about 14 times already.  I try.  So hard.   He just doesn't care.  Or lacks confidence.  Or is lazy.  Heck if I know.

I began feeling like I was just always going to have to do everything for him.  I know that the time will come when his arms no longer work and so I will have to begin dressing him again as a teenager, but I used to think that somewhere between now and then, Andrew would dress himself.  Well we've had weekly OT* since he was about 15 months old and Little still seems to have no desire or idea how to put on his own shirt.  Left arm through the neck hole?  Sure, that seems right.  It sure would be easier than sticking it through that other smaller one.  Wait, I'm stuck.  And it's dark.  MOMMY HEEEEELP!!!!  You do it!!!!   *Not blaming his OT.  She is wonderful and kind and cares so much about Little.  She has practically transformed his little hands from curled up, crunched in closed fists to a hand that can grasp a crayon and hold a spoon and finger paint.

As with most all of Little's milestones, I've been waiting a looooooooong time for this one.  Andrew is not 29 months, he is 39 months (again, that's 3 years and 3 months).  So 10 months past what is considered "average" for that phase to start.  Now, before you all get hung up on the use of the word "average", please notice that I did place it in quotations, but I have to use some adjective that describes the way a child without any sort of special needs typically is expected to develop.  And besides, Andrew is not average.  Duchenne does not occur in your "average" child.  So yes, the word is appropriate.  I also could have used normal, typical, regular, usual, etc but those all seemed worse to me.  So average it is.  Back to the point here, which is that my child has never been a "me do it" toddler.

Until now.  Halleluyer, my son has started saying, "I can do it by myself!" for the past 2 weeks.  All of the sudden, one day he just decided that he doesn't need me to carry him up the 2 steps from our garage to the inside of our house, he can crawl up them and get in himself.  He doesn't need me to get him a spoon out of the drawer for his cereal, he can pull the drawer open and dig one out himself while I am pouring the milk.  He has decided that he doesn't need Daddy to carry him out to the mailbox, he can walk there himself and pull open the hatch.  He doesn't need me to loosen the Velcro on his monster shoes before pulling them off, he can do it himself (the Velcro, not the pulling off part - but we'll get there).  <-- actually="" already="" and="" ask="" back="" be="" believe="" by="" clothes="" come="" day="" dressed="" get="" go="" he="" him="" his="" i="" let="" ll="" might="" myself="" nbsp="" one="" out="" p="" pick="" room="" starting="" that="" the="" time="" to="" when="" will="">
He has been trying to do so much this week.  He is still so aware of his limitations, though.  Like earlier today, he wanted a mini bag of Fritos for a snack, so he went to the pantry and got them himself.  Then he brought them to me and asked me to open them.  Didn't even try to do it himself, as he knows he lacks the strength and dexterity to grasp the two different sides of the bag and pull it apart.  Many times in these last 2 weeks, I have heard him say "I can do it!" then pause as his mind wraps around the mechanics necessary to accomplish whatever it was and then ask me "Can you help?"  And yes, this new sense of freedom and bravery and confidence he has means more and bigger messes in the house.  Like the flooded kitchen floor referenced in the first paragraph...  But these are messes that I am lucky to be able to clean up (now with his help).

I don't know if it's preschool and being around so many other children who can physically do so much more than he can or just that the particular switch in his brain that signals the "I can do it" attitude to kick in has finally activated, but I am so thankful.  This is a stage that is so easy to take for granted or get annoyed with because doing it themselves means it takes 7xs longer, but I welcome it with open arms.  This seems to be a recurring theme in the Palmer house...crawling, making messes, having to with a special needs child is so challenging yet rewarding in ways life with an "average" developing child is not.  I believe that my sense of gratitude is much more sensitive/heightened than most people's.  Every milestone that he hits is a true gift.  Ok, I lied.  I am not thrilled at all with the WHY? that follows every. single. thing. I say to him.  But then again, speech has never been an issue.  So I guess I just reinforced my point.

Speaking of preschool - here is how much he loves it:


Wednesday, May 1, 2013

Muscle Walks and a Talent Show

So our 2013 winter/spring season of fundraising has finally come to a close.  In early March, we had our annual MDA Muscle Walk in Arkansas.  We raised $2630!!!!!!!  WAY past our goal of $1500!  I just can't thank you guys enough for all the donations!  Little's League totally came through this year.

We shrunk in size a bit this year, but it sure didn't slow down our spirit!  Check out Little's sweet ride during the Victory Lap!

That's my dad, for those of you wondering.

Our youngest team member turned 2 that day, so we celebrated with cupcakes.

Little Boy's always in the spotlight.  He knows exactly what he's supposed to do in front of that banner.

The MDA crew

And because.......well......putting Andrew on a horse is never not hilarious.

My mom couldn't take it and swooped in to rescue him.

Next up, we had Music City Muscle Walk (Nashville).  We couldn't actually attend since it was the same day as Little Rock's, so I worked with the chapter there and found a way to keep our team registered but donate late.  For that, the incredible students at Montgomery Central High School in Cunningham, TN devoted their annual Talent Show for charity to Andrew and Duchenne - for the second year in a row!  These teens are so amazing!!!!!!!  They can pick any charity they want, so for them to pick MDA again just blew my mind.  Thanks to these students, we got to send $800 to MDA Nashville!  That's the exact amount of money it takes to send one child to MDA's summer camp.  So the money will either sponsor a child with DMD for summer camp, or go to DMD research.

Here are some highlights from this year's crop of talent:

Jack Roney

Haleigh Smith

And the winner, Madelyn Pulley

 Little and his girlfriend, Littler (who is actually older than he is!) getting cozy to watch the show.

Our "check" for $800 - which all came from donations at the door.

All of the participants and the student directors and emcees with Andrew and his big check.

Thank you again to Bailey McMahan, Lauren Ritter, Maggie & Scott Davis, and the MCHS NHS for putting this on and letting us be a part of it.  We were truly honored.

So that makes a total of $3430.00 that Little's League raised for MDA this time!!!!!!!!!!!

Our Little's Leaguer of the week:  Wayne Pinckley!  Wayne is a member of our church, Barker's Mill Church of Christ, adores Andrew, and has been known to make me cry like a fool a time or two.  :)  This photo is from an old timey play date our tots had at church a few weeks ago.  I don't think you can usually find him on an itty bitty trike, but then again.......I don't really know what he does in his spare time.  ;p