Thursday, March 31, 2011

Spina Bifida has been getting on my nerves again!

Every so often Spina Bifida starts to get on my nerves a bit.  (You might remember a similar post several months ago:  Spina Bifida gets on my nerves!) It's not everyday, not even every week, but I do go through seasons where I find SB to be very annoying.  I am having one of those seasons right now.  It actually started early last week, Tuesday to be exact.  I went to see the doctor who completed Caleb's neuropsych testing to get the results of the test.  It was not lost on me that last Tuesday was March 22, which just happens to be the day (6 years before) that Glenn and I received the news that our baby boy had Spina Bifida.  So, I think I was already expecting bad news from the neuro-psychologist.  I know it's not exactly sunshine and rainbow thoughts but that was my mindset that day.  Anywho, I won't get into all the details of the testing because they did 7 different tests and my mind couldn't even process all the information I was given.  Here are some of the basics:

*Caleb's verbal memory is not great.  Example: when given 4 or 5 different words and then asked to repeat the words he couldn't do it.  Even with repetition.  He could, however, remember pictures.  So definitely a visual learner.  This isn't a bad thing it just makes school a little difficult because the vast majority of instruction is given verbally.
*He gets overwhelmed easily so he will do better with short instructions with just a couple of steps at a time.  It's also important to check for clarification to make sure he understood the instructions.
*If you read him a story and then ask him what the story is about, he can't answer that.  But he can answer specific questions about the story, which shows that he comprehends the story but has trouble summarizing the story on his own.  The doctor said that he will likely do better at multiple choice versus fill in the blank.
*He is a concrete learner.  Has trouble with more abstract thinking.  Example: the other night for homework he had to circle all the squares on the page.  He knows what a square is.  However, there was one square that was turned a little bit so it looked like a diamond.  To him, that was a diamond, not a square.
*He is easily distracted (no surprise there) so he benefits from frequent breaks.

The doctor said that everything they saw in Caleb was very similar to what they see in kids with Spina Bifida.  She wasn't overly concerned, just gave some recommendations for the school so that his needs can be met and he has the best opportunity for success.

Could he have these same issues even if he didn't have Spina Bifida?  Of course, these aren't issues that are only found in kids with SB.  

Do I blame Spina Bifida anyway?  
Yes, I do. 
Yes. I. Do.

When I came home from getting the results, I was beat down.  Even though there aren't any serious issues, it's not that Caleb can't be successful in school.  Caleb just needs some accommodations to help him learn and to help him succeed in school.  I just hated that there was another thing that SB is affecting.  It would just be nice if SB focused on one thing to mess with, but it doesn't, it affects everything.  And it gets on my nerves.  

Is it the end of the world?  
Is it manageable?  
Of course.

Glenn and I have also been faced with the decision of whether or not Caleb should repeat Kindergarten.  He had just turned 5 years old when school started, so he was a VERY young Kindergartener.  I knew that this year could be a "trial run' for him and that repeating might be a good idea just to give him another year to mature and really solidify the basics learned in Kinder.  But when faced with the actual decision, I was torn.  I researched and read everything from "Having your child repeat Kindergarten will turn them into a serial killer" to "It's great to have kids repeat if they need it!  No big deal!"  In the end we have decided that repeating is the best thing for Caleb.  I could place him in first grade but I don't think he is 100% ready. We want next year to feel like a brand new year to him even if he is getting a "redo" for Kindergarten so he will have a new teacher, new classroom, new friends.  I hope we are making the right decision.  I know it shouldn't seem like such a big deal but this has been a tough decision for me and has caused quite a bit of anxiety and worry.  I'm a mom, I worry.  It's what I do.

Anyway, all of this has made me a tad bit annoyed with SB.  I just see how hard Caleb works for everything.  Some days it seems like nothing comes easy for him.

But then we go to Open House at his school and I see this:

A super happy kid showing off all the work he has been doing at school.

His class has 2 ducks in attendance!  I hear about these ducks from Caleb on a daily basis.  The kids absolutely love them.
Caleb has been really interested in the Statue of Liberty lately and I wasn't sure where this new fascination came from...and then I saw this mural in the library.  I got 3 books about the Statue of Liberty at the library and Caleb has had me read them over and over, I even read them to his class yesterday!

So Spina Bifida has been getting on my nerves again, and I'm sure it won't be the last time.  It is what it is.  And we have to climb whatever mountain we come to.  Caleb is a smart kid, these tests do not change that.  They don't define who he is or what he is capable of, anymore than SB defines who he is.  Just like all of us, he has some areas that are harder for him but he is certainly no stranger to hard work.  I'm glad we had the testing done because it gives me a better understanding of how his brain works and how he learns.  This is vital information for a school/teacher to have, it allows us to set the right goals and put the right things in place to help him succeed.

Tuesday, March 29, 2011

Caleb knows a celebrity!

Well, Caleb doesn't actually KNOW a celebrity, but, he did receive an autograph from an up and coming young actor.  Some of you in the SB community may have heard about this new show coming to NBC in April: "The Paul Reiser Show".  Well Brock Waidmann is a 13 year old boy (with SB) who was cast as one of Paul's sons on the show.  I heard about the show several months ago and I started following Brock on Facebook.  Last week I posted a comment on his Facebook page that I had seen a promo for the new show.  The next day I got a message from his mom offering an autographed photo of Brock since I was the first person to post that I had seen a promo!  How cool is that!

How cute is this kid!  I am so excited about watching Brock on this new show.  He is just a regular kid pursuing his dream, and he just happens to have Spina Bifida.  Here is an interview with Brock that you can read.
The Paul Reiser shows starts April 14th on NBC.  Make sure all of you tune it and show your support for Brock.

Monday, March 21, 2011

If you plant it.... just might GROW!

So, I started my own garden a few weeks back.  This is my very first garden.  I have no idea what I am doing.  I read a book.  I took a class.  I planted some seeds.  I crossed my fingers.

I thought I would show you how my little seedlings are coming along so far.

 These are potatoes.

I started off planting lettuce, spinach, cilantro, potatoes and swiss chard.  These have really stared to sprout.  I also planted strawberries but I'm not convinced they are going to make it.
Now that the weather is warmer, I planted cucumber, watermelon, cantaloupe, peas, and green beans yesterday.  Since this is my first garden I don't really know what to expect.  I'm just hoping that at least one thing turns out to be edible.  I'll just learn as I grow!
I also planted a flower to attract bees, I guess bees are good for plants.  Although I hate bees so I'm not sure why I want to attract them.  And so far all I have seen are wasps and I really hate those!  You should see me when a wasp gets around me (or any bug for that matter).  I scream like a 4 year old girl and run away.  It's quite comical.

I'll keep you posted on how my garden grows because I know all of you are just dying to know :).

Sunday, March 20, 2011

Spring Break 2011

Our Spring Break was pretty low key this year.  We stayed in the area and just found things locally to do.  We had beautiful weather this week in Texas so the boys spent a lot of time outside playing in the new sandbox.  Benjamin absolutely loves the sandbox and he would spend hours outside.  I spent the better part of the week sweeping up purple and blue inevitably finds its way into the house.

We took the boys to the park one morning.  I just want to stop right here and say that I have no idea how people with more than 2 kids EVER leave their house.  It took an eternity just to get our 2 boys ready and out the door just for a quick trip to the park.  So, those of you with 3+ kids that manage to leave your house with kids in tow...I salute you.  I am in awe of you.
Now, back to the park.  Caleb used his walker at the park and he walked and walked and walked.  He did get tired and had to stop and rest.  He asked for his wheelchair a couple of times but we really tried to encourage him to keep walking...and he did.  It took him awhile to reach our destination but he made it.  At the end he said:  "Look how far I walked!"

 Our park has a small pond so we took a motorized boat that the boys got for Christmas with us.  We walked all the way to the pond, got the boat in the water....and then...nothing.  I guess the boat didn't feel like working that day.
We just sat and watched as the boat floated to the other side of the pond.  This grandfather and his grandson graciously offered to walk around the pond and get the boat back for us.  Such a nice gesture.
Benjamin makes me tired.  He's so busy.  All the time.  Exhausting.  Almost every picture of him is blurry because he is constantly on the move.

We took the boys out front so that Caleb could ride his Jeep.
For some reason Benjamin thought it would be fun to push a rake down the street.

An 8 year old boy recently moved across the street, he also goes to Caleb's school.  Caleb just adores this boy.  He comes over and plays MarioKart with Caleb, and sometimes he eats dinner with us.  Caleb talks about him all the time, I think he wants him to just move in with us.  The boy's sister was visiting over the weekend and she hopped in the Jeep with Caleb and they took a quick spin down the road.

 Caleb was practicing his standing skills at the couch again.
 He's so proud of himself.

He's actually starting to fall in this picture (don't worry I caught him) but I thought the picture came out kinda neat looking.

We went to see Granny Faye and PawPaw yesterday.  They live out in the country and the boys just love going out there.  Just thinking about all the fun he was going to have was too much for Benjamin, he needed a nap to energize himself.
While Benjamin was catching some Z's in the car, I decided to take a few pictures outside.  Granny and PawPaw have a lot of beautiful trees that were really beginning to bloom.  I fancy myself a nature photographer now.

They have a super sweet dog, Nikki.  She is still a bit of a pup so she gets super excited about company and she loves kids.  Caleb likes dogs but they make him a bit nervous.  He hates barking (loud noise issue).  Plus, I think he knows he can't really defend himself at all.  He can't stabilize himself enough to keep from getting knocked down if a dog were to jump on him.  So, he was cautiously curious about Nikki.
Checking Nikki out, keeping a safe distance.

Caleb gets brave enough to get right down on the ground with her.  Caleb warmed up to Nikki pretty quick and they were good friends in no time.  Benjamin, however, did not care for Nikki.  He screamed bloody murder any time the dog got near him.  I really wish I had his reaction on video because it was quite amusing.  But I guess when you are a little guy like Benjamin, a dog running up to you can be a bit overwhelming.  Plus she knocked him down in her excitement and Benjamin chose to hold a grudge.

On our visit we got to see some sheep and goats too.

Walking around outside (and earning stickers in the process)

So, that's about it.  Our spring break in a nutshell.  Back to our normal routine tomorrow.

Monday, March 14, 2011

Sandbox fun and my 500th Post!!

I learned several weeks ago when I started my garden that my boys needed a sandbox.  They had too much fun digging in my garden so I did some searchin' and found the perfect sandbox for them.

(no these are not my kids, I just wanted to show you how awesome this table is)

This table is perfect.  It is off the ground so that the boys aren't just sitting in sand.  It has an umbrella which is perfect for Caleb since he gets hot when it is 67 degrees outside (thanks to Ditropan-you SB parents know what I am talking about)Half of the table is for water and the other half is for sand.

 Caleb and Benjamin LOVE this sand table.  They have spent hours outside just playing in the sand.  I decided to just put sand in both sides of the table, the boys didn't seem interested in the water side.  So, I bought purple sand for one side and blue sand for the other.  I'm sure it will be blurple or purplue sand in about 3 days (that's blue and purple mixed together in case you were wondering).
How gorgeous is my kid?  Love that smile.

The boys actually playing nicely TOGETHER!  This is a rare treat.  Of course, about 2 seconds later they were fighting over who gets the yellow shovel.  Oh well, it was nice while it lasted.

I like that the table is tall enough that Caleb can stand at it if he wants to.  And it is the perfect height for Benjamin too.

Somehow a monster truck and several other cars made it into the sandbox.

Sweet little Benjamin fingers.

And I thought it was worth mentioning that this is my 500th post!  How cool is that?  Seems like something to celebrate in my opinion.  It was actually Glenn's idea for me to start this blog.  I couldn't imagine that anyone would ever be interesting in reading about me and my family (except for grandparents).  Convinced that no one would read the blog, I started it anyway.  That was 4 1/2 years ago.  What started with a handful of readers has blossomed into...well...I have no idea how many readers I have. The blog has had many makeovers.  It has become my journal in many ways.  Because of this blog I have connected with so many other families that have a child with SB.  I think that has been the biggest blessing from this blog.  I have found dozens and dozens (and dozens) of other blogs out there that bless me as well.  Because of this blog I have found a wonderful online family.  I'm tickled that any of you bother to read about my kids and take the time to comment.  All of you are a blessing to me.  
Here's to 500 more posts!!

Wednesday, March 09, 2011

Earning Stickers & Riding Horses

 I mentioned the Incentive Calendar a few days ago.  This past weekend we took the boys to Petsmart (they love that place).  Who needs the zoo when you can take your kids to Petsmart for FREE!  
Caleb used his walker, therefore, earning himself a sticker.
 Checking out the fish.  Very exciting stuff people.

And my personal favorite, the cats!  I tell you that if I wasn't married with kids I would totally be the cat lady.  I would have me a bunch of cats.  I still miss my sweet Ally cat.

After Petsmart we walked next door to Half Price books.  Benjamin could have spent hours in this store.  He was fascinated.  Overall, Caleb did great with his walker, he got tired a few times and had to sit down (so thankful for that fold-down seat).  Glenn had to carry him back to the car because his legs were so tired.  He did great though.  So proud of him.

Caleb started back with therapeutic horseback riding today.  We took a long break from it when he started Kindergarten last fall.  I was worried that he would be too tired after school making horseback riding difficult. So, it has been about 7 months since he has been horseback riding and I was anxious for him to start back up.
Caleb seemed a little nervous at first.  I guess being away for so long had an impact on him.  I had him use his walker while we were there.  The first thing I noticed was how much he has improved with his walker since the last time he did horseback riding.  He had no trouble walking from the car all the way into the horse barn and down to where the riders get on their horses.  It is a decent distance for him to walk and I remember that 7 months ago it was hard for him to make that walk and he couldn't make it the entire way.  I guess even I don't always realize how strong he has gotten, even in just recent months.
He did great on his horse, "Gemini", today.  He remembered all the commands to make his horse go and stop.

He seemed like he was having a good time.  Unfortunately I didn't get to watch him ride because this one particular toddler isn't much for standing still.  So, I spent most of Caleb's session chasing Mr. Thumb Sucker around!
Benjamin LOVES Caleb's walker.  He walked/ran all over the place with that thing today.  I had several people tell me that he was doing such a good job with his walker.  I had to tell them that it wasn't his walker, he just likes to steal it from his big brother!

We went outside to check on the horses.

Getting a close up look!

(And thank you to those of you that responded to the burp cloth blues post.  It seems the consensus is to let him keep his lovey but limit it to just nap and bedtime.  I'm all for that.  The only problem is that he throws a huge fit when you tell him to go put it back in his bed.  He's a mess.  But I sure love that booger, even though he makes me absolutely CRAZY!!)
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