Showing posts with label physical therapy. Show all posts
Showing posts with label physical therapy. Show all posts

Friday, September 4, 2015

The Unseen Disability, and The Hike.





"To believe I walk alone

Is a lie that I’ve been told



So let your heart hold fast

For this soon shall pass

Like the high tide takes the sand



At the bitter end

Salt and liquid blend

From the corner of my eye

All the miles wrecked

Every broken step

Always searching always blind



Never fear, No Never fear



So let your heart hold fast

For this soon shall pass

There's another hill ahead"



--Let Your Heart Hold Fast



Last year, on an overcast but warm afternoon in February, the front door of the Grey House swung open, then closed with more force than usual.  Caleb was home from school.

"Hey buddy, how was the hike?"  I asked.  Today was the 4th grade hike he'd been looking forward to.

"It was HARD.  I'm never going hiking again!"  he replied, with a lot of emotion behind his words.

"What happened?"  I asked, but wasn't too worried.  Caleb is an emotional kid, and sometimes just needs to get the big emotions out by venting, then can see through them a little more clearly.

"It just was hard, and I hated it.  And I'm never going again!"  he repeated, yelling this time.  I asked a couple more questions but he still didn't open up, so I dropped the subject and moved on.  Today was Leah's 6th birthday, and we were going to go out to celebrate.  I asked Caleb to get his homework done and clean his room, then get ready to go to the restaurant.

Normally he would react well to going to his favorite place to eat, it would be a motivator to get him to stay on task and move quickly.  Not today.  His foul mood continued and affected anyone who crossed his path.  He complained with the small things I asked him to do, he purposely looked for ways to bug his sisters, and he wasn't just teasing Leah--he was picking on her and criticizing her.

Each time he did, I stopped him, telling him to change his behavior or earn a consequence.  When he continued, I pulled him aside, reminding him of how he had treated Leah last year on her birthday.  He had been so kind to her, and so thoughtful and fun, and it had meant the world to her.  I asked him to try harder to remember this is the one day a year that's just for her.  I also asked him if anything else was wrong--did something happen with his friends?  Did he do poorly on his spelling test?  Was he tired?  He said "No" to all of these.

In the past when Caleb has treated her this way, we've been able to trace it back to an experience that's recently happened that has made him feel really insecure or embarrassed.  He takes those insecurities out on her until we can get to the root of the problem and talk about what is really bugging him.

"Okay, well  I'm here to talk with you if you want me to.  But if you don't want to that's fine, but we do not deserve to be treated the way you're treating us.  If there isn't anything else wrong then your behavior needs to change.  Now."  I said firmly.

We all got in the van and drove to the restaurant.  While we were being seated, Caleb refused to sit by Leah, saying she always had to sit next to him.  The look on Leah's face was enough, she was devastated.  I gave him the stink eye and told him with a low voice to sit down and knock it off.  He stayed quiet, but inched over to the edge of his chair.

We ordered our food and while waiting for it, began the tradition we have on birthdays, to go around the table and everyone says what they love about the person we're celebrating.  We went around, and then it came time for Caleb's turn.  He gave a half-hearted, generic answer, and wouldn't look at Leah when he said it.  I watched him inch away from her again.  That was IT.

Ben was talking with the girls when I leaned over the table and with my voice two octaves lower than normal said,

"One more thing, Caleb.  If you do or say one more unkind thing to your sister on her birthday, you and I are taking Dad's car and you're going home to bed.  I have been as patient as I can be.  If this weren't her birthday, I would not feel so upset right now.  But she does NOT deserve this and you are not stopping.  When you act this way and can't control it, you're telling me you're too tired and you just need to go to bed."


Then.

He looked at me from across the table, and his face just crumpled.   Tears spilled onto his cheeks and he began to sob.

"Buddy, come here,"  I said with my voice softened.  He walked around the table and stood next to me.  "What is it?  Please tell me, I'm here for you."

And then it all came tumbling out, in between sobs.

"The hike was so hard, Mom.  SO hard.  My legs ached and kept shaking so hard that I kept falling, and my group left me--the only one that stayed with me was the mom of one of the kids, because she felt bad for me.  I was so slow, I could barely make it.  I was the last kid up the mountain.  By the time I got to where we were supposed to eat lunch, everyone was already eating and most of them were finished.  I was so tired and wanted to turn around but I couldn't.  I fell over and over again, even wearing my good shoes.  It was so embarrassing, and I felt so stupid and slow."

My heart broke.  As he cried, I did too.  I hugged him tightly, saying,

"Oh Caleb, I am so sorry and am so glad you told me.  I had no idea.  I don't know why your group didn't stay with you, and I wish they had.  But more than anything?  I am SO proud of you.  So, so proud.  (I could barely speak because I was crying so hard at this point.) The other kids don't know what it feels like to be in your body, with your muscles.  They don't know what it takes for you to make it up that mountain.  But I do, and your dad does.  We know the tightness of your muscles that makes it so much more difficult, and that your legs tremble when they're working hard.  We know how far you've come, and how you have to work twice as hard to keep up with others.

The thing is?  You don't look different.  And while that's a blessing most days, today made things more lonely for you.  If you had crutches, or a wheelchair, or were still wearing the orthotic casts you used to have to wear, people would know, because they would be able to see the difference.  And I'm guessing that if the kids in your group knew, then they would have stayed with you.

But the fact that you didn't quit--that you finished, you got up to the top of that mountain and you made it all the way back down, it proves again to me just how strong you are on the inside, regardless of your body's strength on the outside.  You did it, without the help of anyone.  Just you and God, getting up that mountain together.  


I know today feels like it was an awful day (Caleb nodding his head fiercely), but I have a feeling that you're going to look back on this day as one that was a turning point for you.  One where you can feel proud of not quitting, regardless of how hard it was.  You have yet again made me feel so grateful, and lucky, and blessed, and proud to be YOUR mom."


I held him while he cried for another minute, then calmed down.  The rest of the night he was back to his normal happy self and treated Leah amazing.

Watching his tears fall in the restaurant, I found myself in a strange place as a mother of a kid with an almost unseen disability.  For over two full years, Caleb's disability was obvious.  But once he learned to walk and his seizures stopped, he just kept moving forward.  He's on the small side still, but unless you look closely or know what you're looking for, you can't see his struggle.  Physical therapists spot it right away and ask, but other than that, most are surprised to find out he has Cerebral Palsy.  I have been amazed at how his body has grown, and how he has compensated from his earlier days.  I've been grateful he hasn't had to live life in casts, or with his walker.  But with this hike, I realized I was almost wishing he did look different, and stand out in some way, so others would know and be more sensitive to it.  Then I caught myself--what kind of a mother wishes for their kid to have more challenges than they already do??  

After we were home and the kids were in bed, I told Ben about Caleb's hike.  As I told him, I could feel the Mama Bear in me rising.  I had purposely written on Caleb's consent form for the hike that he has CP--even though his teacher already knew that, I wanted to give her a reminder.  I wrote that he tired easily and had less endurance than the other kids his age.  Why didn't she give him a hiking buddy?  Why wasn't there more supervision over the groups staying together?  Why didn't they start out with the slowest kids in the front, like they do in Boy Scouts?  I wanted to protect him from feeling the way he had that day, but I couldn't--it had already happened.  So getting angry seemed to be the best secondary option.  I wanted to write her an email that night, giving her my very strong opinion of disapproval at the way my son had been treated.

From the time we first knew something was wrong with Caleb, I worried about moments just like this one.  I did not know how I could bear having him hurt, or made fun of, or left behind.  I wanted to protect him from any heartache.  A few years ago, I realized that if I did protect him from all of it, I was holding him back from the opportunity to grow.  I knew the best thing I could do for him was to let him fall and teach him how to get back up, and support him by being there for him, loving him, and teaching him how to love himself.  

I believe every moment--good and bad--is a teaching opportunity when it comes to my kids.  And I know my son.  He was born with a fire in his belly, a big fun personality, and a spirited, competitive side.  He was also born with a body that has set limits on what he can do, so his spirit and his body are in a constant state of battle with each other.  The problem is, he's so competitive with himself that when there is a physical feat standing in his way, he just wants to avoid it all together.  If he can't physically be where he pictures in his mind he should be, or if he's set up to compete one-on-one against someone bigger/stronger, he doesn't want to try.  We have been through this many times.

If he's on a team, he'll go for it because the spotlight isn't on him.  But if he could potentially fail on his own, or look slow or weak--then he digs his feet in and refuses to budge.  Ben and I have had to learn how to navigate this.  We are still learning.  We want to work within his limits and be sensitive to them, while also pushing him to just do the best he can do and not give up.

I didn't send the email.  Instead I decided to sit with all of this for a couple of days and see how I felt after the weekend was over.  The more I thought about this hike, the more important I felt mine and Ben's reaction to it was.  We could either make this a big Victim moment for Caleb, or a big Victory moment.  If I really believed the words I had told him--how proud I was of him, then I wanted to focus on that.  I wanted this hike to be known as a victory.  The Mama Bear inside calmed down, and my anger and protectiveness melted away.  I did want to mention it to his teacher, but more to help her be aware of what had happened, so that maybe they could do things differently for next year.

We've talked about the hike, since that day.  We focus on the getting up part, not the falling.  We focus on the finish line, not the part where he was left by his peers who didn't know what he was experiencing.  We focus on the courage it takes to keep going, one foot in front of the other up the mountain, driven by this God-given gift of his big personality that pushes his tight, but weak muscles to move forward.

And every dang time I talk to him about it, I cry.

I am so grateful I get to be this amazing boy's mom, and watch him learn how to pick himself back up, focus on the victories, and keep going.





Wednesday, August 18, 2010

yesterday.


we went to caleb's last PT appointment before we move...











miss bethany has been awesome & caleb seriously loves her & all of the fun things he gets to do while he's there.

leah loves trying to steal caleb's toys while he works hard, and also enjoys staring at herself in the mirror.  {yes she's got the "bink-bink" in her mouth.  it was past her nap time & she was making us all too aware.  don't judge.}







then we rushed home for nap time/quiet time, and during those i made these....




so we could take them to say good-bye to our first friends in phoenix...


{blue gum:  find it.}


we just love the beckers.  fawn was nice to me my first day in church, when i was totally self-conscious and shy.  luckily she has a really outgoing personality & invited a socially awkward individual such as myself to hang out.  now, two years later we are still friends. 


NOBODY throws a party like fawn.  she has the best food and even better decorations & party favors.  she's also amazingly talented at sewing and making adorable hair clips for little girls.  i'm really grateful for her & how she has taught me how much it can mean to someone to reach out to them when they're new.
we'll definitely be keeping in touch!

caleb has already promised to become pen pals this little gal:



which is good since they just might get married one day.




then, since we had nothing to eat in the house except cans of green beans and freezer-burned popsicles, i took the kids to the store & we rushed home to find a surprise.  ben was home early {at 6pm instead of 8pm} and we got a play-by-play of his first day at his new practicum, where he was an ACTUAL therapist to several new clients.  i think he's going to love it, and i'm glad he's getting a taste of it while he's still in school so that he can change his specialty if he wants to.

i was so glad he was home because after staying up until 4am the night before & then running around all day, i was pretty worn out.  so he helped feed the little madam:






after dinner, baths and bedtime for the kids, i was able to go out with these two:





my good friends aubrey & val.  we have been doing weekly girls nights over at my apartment for a few months and i am seriously grateful for it.  they gave me something to look forward to during an otherwise pretty lonely week of nights by myself, and i am going to miss it.  but we promised to still meet up once a month to hang out.  and since they're both also moving, i am also on a secret mission to find them both places to live that are close to us!



it was a long, good day.  now i am back to the ol' grind.  how in the world did we live with so much stuff to fit into such a small space for two years??

Wednesday, August 4, 2010

the caleb syndrome, part #967

an update on the fantastic 5 year old...

caleb's physical therapy has been going well, but both the physical therapist and i have noticed that it isn't that caleb is just lacking physical strength & needs exercises to build up that strength, but that there is something strange going on with his legs.

something strange.

huh.  we've never heard that one before when it comes to caleb.  {sarcasm.}

he was nick-named "the caleb syndrome" at about 2 years old when all of his symptoms couldn't add up to one clear diagnosis.  we accepted that this was just the way it was going to be, and focused our energies in just getting him to the best physical condition we could instead of worrying about what we couldn't control.
however, ben & i felt like there was something off, which was why we pushed to get a physical therapy evaluation in the first place.  

and after working for a couple of months, she and i both felt like something was off again.  while doing stretching and exercising, we both saw that he was unable to point his toes....even just a little bit.  and it wasn't like he wasn't strong enough.  he just wasn't able to.  when we would hold his toes down and gently stretch them forward, his knees would come up.

as ben and i worked with him in the swimming pool, we would watch him kick.  he would constantly be kicking in the flexed foot position, and no matter what we did, he could not straighten his leg and foot together.  completely unflexible.

on the other side, when we would flex his foot and then push up, his foot would flex so much that as his toes would be pushed up toward the front of his leg, his toes would almost be able to touch his shin bone.  completely too flexible.

also, whenever caleb would push on the balls of his feet, like try to balance or put any weight on the balls of his feet, his legs would tremble.  this is called clonus and usually points to a neurological problem.  caleb had this for a while when he was younger, but it was not severe, and the repeated MRI's could not find the source.

but in physical therapy, we saw that whenever caleb rides a bike, his legs trembled.  whenever he balances on anything, his legs trembled.  when he walks on his tiptoes, his legs trembled.

so, we were referred to an orthopedic specialist and a neurologist.

luckily, it was just in the nick of time that we found this out.  we were heading to utah the next week and had worked with shriner's hospital for about 2 years, and already had a relationship with both the orthopedic specialist and neurologist.  we were able to get a last-minute appointment and evaluation with them.

while we were there, we heard the fantastic words,

"you have no idea how rare this is."

wow, that's awesome! {repeated sarcasm}

we have heard that too many times and would always inwardly groan at the phrase.  it's not like you get a cash prize when you are told your son is "rare."  believe me, if oprah were behind the dr's curtains and as soon as the word was uttered she emerged yelling, "YOU GET A CAR!  YOU GET A CAR!  EVERYBODY WHO'S RARE GETS A CARRRR!" we wouldn't mind being told this so often.

but what it usually means is that the doctors have absolutely no idea what's going on with him, but they know that something is wrong.

basically they concluded that yes caleb has something going on.  yes it is pointing to something neurological and more than likely connected to issues with his spine. and yes they may have missed it during those first 2 years because it is so rare, and because he was so young that they were hoping that the small things they were seeing would normalize as he developed.  they are now pointing to a diagnosis that had been brought up 5 years ago, but was dismissed.

so.

caleb, leah and i will be heading back to utah in the beginning of september.  he will have a full brain and spine MRI done.  even though he has had 4 MRI's already, this one will be a little more intense.  unfortunately ben can't take the time off of school & work, which is totally understandable. i'm grateful that we will have family to help me with leah while i am there with caleb.

then i will meet with the ortho. specialist and neurologist two days after the MRI to discuss the conclusions.

there are good and hard things about each outcome:

if he does have something going on that the MRI catches, it may result in spine surgery.  but that could lead to the possibility of him getting better, and not struggling for his entire life with these physical delays.

but still.

spine surgery.

if he doesn't have something going on, then we will go back to where we have been.  and just accept that he is where he is, and he will stay this way and we will help him be his best with physical therapy and working from home.

with either outcome, i know things are going to be alright.  and i have to say that i'm so grateful for the amazing medical staff at shriner's.  honestly, we have considered working with them a privilege.  
and no matter what, 



we are so grateful for mr. caleb and for the blessing it has been to be a part of his life.

a trip to shriner's is always such a wake-up call to us.  
things could be so. much. more. difficult. than what we are facing.  
we have a happy, healthy fella who loves life and has overcome so much already.

and we know that no matter what the outcome is, 
he will be able to overcome that too.

Wednesday, June 23, 2010

in order to throw an elephant across the room.



a couple of weeks ago, mr. caleb had a physical therapy evaluation.

this was at the request of ben and myself, who have felt for a while now that even though he is out of the woods with his seizures, his physical strength is not up to par with where his peers are.

we've signed him up for tumbling and soccer, hoping that these activities would help strengthen him, but the more he got into these activities the more we felt like something extra was needed. during each soccer game he ran his heart out, and on more than one occasion he came up to me after the games and said, "mom, i'm so tired. i just can't run as fast as these kids."

it was hard to hear him say that, even though ben and i could see that he was struggling to keep up. he ran as fast as he could and would come home exhausted.

ben and i are really careful what we say around him when it comes to these concerns because we don't want him thinking that he doesn't have the potential to be just as fast or as strong as his friends. we try to just encourage his efforts and work with him at home, under the guise of "fun" like wrestling and obstacle courses and racing and getting "big muscles like dad."


as caleb and i walked into the physical therapy building, i began to second-guess myself. we were walking behind a girl who was probably just around caleb's age and had to hold her mother's hand as she steadied herself to take each step. her legs were bent in angles they weren't supposed to be and wiggled back and forth as she balanced on her tip toes.

i looked down at my little boy who was walking perfectly fine and worried that i would be looked at by the physical therapists as an overprotective mom, or that i was hyper-sensitive because of caleb's past.

well, we were already there, so we went ahead with the appointment and i decided that i could let the therapist make the decision.

it was an hour long appointment, and as we got to the end of that hour i was grateful that i listened to my intuition. caleb tested physically much lower than he should have, and qualified for weekly appointments.

the therapist remarked that she felt he was probably lacking strength due to the fact that he never crawled. he bum scooted {which was hilarious to watch, especially when he went really fast...we called it "warp speed scooting"} and so he lacked the strength that most kids acquire during crawling, pulling up to cruising, etc.

so anyway, he'll start next week and i'm excited for him to start. he's excited too, when i explained to him that he gets to go and do a bunch of fun things and get even BIGGER muscles than he already has {i love what motivates a 5 year old}.

as we walked out of the doors and were talking about all of the things he would be able to do with his huge muscles he said,

"i can't wait for my huge muscles! then i'm going to be strong enough to throw an elephant across the room!"

and i laughed, but didn't correct him. because who knows?

maybe someday he will.