Bursts and Set Backs

Progress for Seth continues to be steady, continual and with occasional huge bursts.  This past week, we had a burst. 

 

Two weeks ago, I asked Seth's PT to let him try canes.  To be honest, we were both a bit doubtful that Seth could actually pull it off.  He has very high tone and does not have the best balance, but he's surprised us before.  I was curious what he'd do, if he'd be able to figure out how it works.  I told her if we never try, we'll never know for sure.  He surprised us yet again. 

 

 

This was week one, so she held the sticks and moved them.  He just had to shift his weight bearing to his legs and learn to push down on the sticks in order to lift his legs.  Two weeks ago, we were both pretty sure this wouldn't work.  This week, we started talking about canes and then getting him to independent walking.  Hard to believe that a year ago, he had only barely started walking in a Kaye walker and still needed a wedge on his AFO's because his feet pointed downward from years of neglect.

 

The director of the baby house told me that Seth really wanted to walk, that he'd sit in his stroller and watch other kids run around.  He was frustrated that he couldn't walk.  He'd try walking on his pointy little feet.  But without the proper equipment and therapy, they had no way to teach him.  Seth has spent his whole life being a spectator.  He stopped being a spectator when he learned to walk in his walker.  He's learned he has access to his world, that he has freedom to go wherever he wants, that he is a participant.  And now, he's moving even further into that independence.

 

Did you see that look of pride in his face?  I love that!

 

In all honesty, Seth's mobility will probably always be a mix.  He'll use a wheelchair and a walker, and hopefully in some cases, he'll be an independent walker.  Depending on terrain, distance and his own preference, Seth will have some options.  I've learned that's very common with kids with CP.  We are thankful for options.  We are thankful Seth has choices.

 

Seth loves to climb stairs.  He likes climbing them a lot more than going back down. 

 

He has solid AFO's, which means he has no give at his ankles. There's no hinge to make it easier to flex. Try going downstairs sometime (or up, for that matter) without bending your ankle.  It'll give you appreciation for kids with CP and what they do every day to accomplish the things we accomplish without even thinking about it. 

 

When he got his new AFO's two months ago, hinged AFO's were completely off the table, because they were afraid he wasn't strong enough and would crouch. Now, he's walking enough and doing steps enough that a hinged AFO or Leafsprings are really pretty necessary.  I'm thankful for his increased strength, endurance and skills that make his progress possible. 

 

This last video was shot in the parking garage at our home away from home, Shriners Hospital.  This was after therapy and he was already tired, but I was dying to get video of him showing off his other new skill.  This past week, Seth has begun to use his walker with the swivel wheels, which means he doesn't have to just go straight anymore.  He doesn't have to rely on us to turn his walker.  He can learn to turn corners and navigate obstacles, thereby making himself much more self sufficient.  Again, look at the look of pride at all he's accomplished. 

 

Seth is making remarkable progress in every area of his life.  I realized that again when I went back last night and read through our blog from when we were in Ukraine and when we first got home.  He is becoming more and more like any other little boy.  The layers of institutionalization and dependency are falling off fast.  He is thriving.  He is happy.  And he is so, so loved.

 

We do still have our moments though, where we are reminded again of his past.  We have moments where we lose ground.  Moments where we're reminded of how lonely, how sad, how neglectful his life was.  And in those moments, my heart breaks for this beautiful little boy.

 

We had one of those moments tonight. Jeremy, a few of our children and I were in the living room talking and Seth decided to go downstairs.  Without assistance, Seth goes down the stairs by sliding on his bottom.  He's very good at this.  We continued to chat with our kids and catch up on our week, and about 20 minutes later, Jeremy got up to do something.  He looked down the stairs and Seth was stuck on the bottom stair, feet folded back in a W.  He was laying back to avoid falling forward and appeared to not be all that uncomfortable, but I have to wonder if any of my other children would have patiently waited without calling out, for 20 minutes, if they were stuck.  Would I have?  No, probably not.  Seth knows no different.  No one ever promptly responded to his pleas for help.  And so Seth quit making pleas.  Seth waits.  Patiently.  Until I notice him.  He waits his turn.  He hopes he gets a turn.

 

Seth's biggest struggle continues to be communication.  His speech therapist has determined that Seth does not have a speech disorder. There is no physical reason that Seth isn't talking.  Seth isn't talking because Seth was never talked to.  Seth never learned the importance and purpose of communication.  Seth learned to take whatever was handed him and to fend for himself whenever possible.  His wants, his desires, his choices, were irrelevant.  We've had to teach Seth to make choices, to communicate his preferences, that his preferences matter!  We've had to teach him that communication is essential.  Verbal speech is slow in coming, but his speech therapist is certain we will get there.  Until then, we continue to teach him choice making in everything. 

 

"Would you like a banana or orange?"  "Would you like to wear the blue shirt or red shirt?"  "Would you like to take a bath or swing?"  "Would you like to play on the iPad or read a book?'

 

Things I never purposefully set out to teach my other children. Things we just do, as parents.

 

Seth started using a "Seven Level" AAC at school but seems disinterested.  We suspect it's because it looks like a toy and for the most part, Seth is turned off by toys he feels are baby-ish.  So they've started him on an iPad instead, and backing it up with PEC's, and he's doing much better.  He is learning that when he initiates communication,  when he takes control of his communication, he can make things happen.  Not even just making a choice.  But him initiating a conversation. 

 

"I want ____  please". 

 

Big stumbling block for Seth.

 

Because it never worked for him before.

 

Willful communication is power.  It is control.  It is independence.

 

Seth's story is really all about a little boy's journey out of dependency, shaking off the dust of helplessness, and learning that he is strong, capable, and resilient.

 

Seth is all of those things, and so much more.  He's only just beginning to realize it.