Welcome to my silly life

This weekend was interesting, to say the least.  Friday after Brain Balance, we joined another BB mom and her kids at their pool, since ours is closed (until further notice :( ).  Spence decided that he was going to jump to Mommy.  Make that- jump on Mommy.  I got a workout, too.  We stayed for about an hour and a half, after which time I was totally beat, as was Spence.  He laid down in his bed around 7:30.  He was asleep shortly thereafter.  I had planned for us to sleep late on Saturday and then go to the park in the afternoon.  Unfortunately, it stormed during the afternoon, so the park was not happening.  I also started feeling a little under the weather, but thought I was just tired.  I woke up Sunday with a sore throat, slight fever and INCREDIBLE headache.  Little man must have had sympathy pains because he actually took a nap with me around 3 or so.  A wonderful BB mom even offered to take Spence to the park with them so I could rest.  He was sleeping at the time, so I just let him be.  I must have dozed off around 7 or so.  I was awakened by Spencer brushing the hair out of my face.  Then I jumped up.  He had faux tanned himself with a brown Crayola marker.  All over.  Chest, legs, arms, back (who knew he was that limber?) feet (tops & bottoms), he even drew a mustache and some facial hair. I tried not to laugh, really.  But it was so darn funny and he was so proud of himself.  I should have taken a picture but my first concern was to clean him up.  He was laughing so hard in the tub.  Thank goodness it was a washable marker, so it came off with minimal scrubbing.  After he was all cleaned up, I sent him to bed. And he went.  I could hear him singing (I think he was singing).  He dozed off around 8:30 or so.  He woke up in a fantastic mood for school today.  I am feeling better.  Nothing a decongestant and a few Aleve can't cure.  Now I have to go finish cleaning the apartment.  Fun, fun!!

The sadistic moms of Brain Balance

Really- you would think we were crazy, cruel and unfit mothers if you saw our reactions.
My kid got hurt and cried- YES!
Child is bawling because Dad and Pey are leaving- BIG smile on Mommy's face.
When told to do something, he does it, BUT is mumbling something under his breath- Mommy is clapping (on the inside, of course!)

You get the point.  First of all we are not crazy, or cruel, or unfit mothers.  We are watching a process that parents of neurotypical children take for granted.  We used to refer to Spence as a tough cookie.  But, we were wrong.  He didn't ignore the pain, he didn't FEEL the pain.  The neural receptors in his brain never processed the feelings of pain.  So, when he stubbed his toe hard against the door, sat on the floor grabbing the injured toe and crying a little- it was a milestone.  A neural pathway to the pain receptors in his brain has been formed.  Yep- pretty cool. One victory down, a million more to go.

Crying because Daddy and Pey are leaving.  Awesome.  It means that he has formed a bond with them, understands that they are going and not coming right back, and that he will MISS them when they are gone.  You tend to take familial relationships for granted.  Spence loves them, but prior to Brain Balance, they could leave for days and he would be okay with it.  This morning he went in search of his brother and Dad (they left yesterday afternoon.) Another several neural pathways that didn't exist before are responsible for these emotions and changes.

Okay, anger is a right brain emotion.  That is the side of the brain that is underdeveloped in Spencer.  The left side of his brain is probably operating at least at the level of his biological age- 6.  However, the right side of his brain is somewhere in the neighborhood of a three year old.  Force a NT (neurotypical) 6 year old to play with a NT 3 year old.  All the time.  There will be conflicts due to the difference in age.  That is how my son's brain tries to operate.  Sometimes things get lost in translation because the two sides of his brain aren't able to effectively communicate. But, we are working on that.  No ESY (extended school year) today- so we are finishing up breakfast and getting ready for our busy day.  Exercises, Brain Balance, Jump 2 it (maybe) and then swimming (maybe- if the weather holds out!) Gotta work that body to work that brain!

Taking a vacation- from blogging

Okay, I have let a lot of time pass since my last blog.  Not that great things aren't happening every day, but my routine has been disrupted.  (Yeah, I probably could use Brain Balance myself.)  Anyway, my boys showed up early- Saturday instead of Sunday.  Spencer was SO happy to see them. We tried to go to the park on Sunday, but it was just too hot.  It has been a chore trying to get Spencer to go to sleep.  He is okay with sleeping in his room by himself, he just stays up til all hours.  And to top things off, he started ESY (extended school year) on Monday.  Thank goodness the bus doesn't pick him up until 8:15, but it has taken me over an hour to wake the child on both Monday and Tuesday.
Monday- Spencer had no problem catching the bus in a different place, with a different driver, a different aide, a different school, a different teacher.  Then he went to Brain Balance where he earned a trophy.  Stars are good, trophies (paper ones that the kids stick to the wall) are better.  He put the alphabet in order and spelled his name- out loud.  The 'r' was very clear.
Tuesday- After school, we took a family trip into Atlanta to visit the World of Coca-Cola and the aquarium.  Spence was not really into any part of the WOC- except the part where they showed commercials.  He liked the tasting room, but much to my surprise, he didn't try to drink all that much.  At  the aquarium, he loved the penguins.  Only if they kept their distance.  It was funny to see him back up when they came close tot he glass.  He would giggle and jump up and down. it was precious.  He was asleep by 9, which is a huge improvement over the past couple of days.
Today, he has school and Brain Balance, so we will probably go swimming this afternoon.  That is one advantage of having the apartment pool pretty much in my backyard.

Peyton got another Star Wars Lego set while in Disney. He brought it here for me to see.  Spencer was actually playing with it appropriately.  Then Peyton lamented that they didn't buy Spence any Legos while in Legoland.  So, off to Target on Sunday.  We picked out a couple of small Cars Lego sets.  Peyton put them together for Spencer.  It was cute watching Spencer reenacting some of the scenes from the movie.  Since he didn't have a Lego Mater, he used his regular one.  Peyton was such a big help around the apartment and with Spencer that I gave him $5 for helping out.  He asked me if we could go back to Target on Tuesday while Spencer was in school.  I asked what he wanted to buy.  He wanted to use the money he earned to buy Spencer the Lego Mater set (5.99 plus tax) Of course I fronted him the extra.  I was touched that he wanted to spend his money making his brother happy.  We must be doing something right!

And on that note, I'll leave you until next time...

Fabutastic!

That is my word to describe this year's vacation to Disney/Orlando.  But, in order for you to appreciate where we are now, you need to know where we've been. Here are the 'lowlights' from last year's vacation:

• Spencer did not want to leave the room.  Ever.  It was an ordeal to get him dressed and out the door.
• He was fixated on wearing swim diapers, which don't hold much.  He would have several accidents while wearing them.
• Spencer would tire out easily.  If we didn't rent a stroller, he would try to sit in other children's strollers.  He was too big for a single, so we had to rent a double stroller. (which he was still a little too big for.)
• He didn't want to leave my side.  (That is how we got him to leave the room.  Choose Mommy or the room.) I couldn't even take a shower or go to the bathroom without him following me.  If I managed to make a break, he would cry and beat on the door.  At Disney, this was worse.  The one time I managed to sneak out to use the restroom, he bolted out of the restaurant and was halfway down the 'street' before Peyton caught up with him.  
• Spencer didn't want to leave the stroller. He even ate in the stroller, refusing to join us at the table.
• Had to physically force him out of the stroller to ride ANY rides.
• Spencer melted down several times every day.

THIS YEAR  (highlights!)

• Spencer would bring us his clothes when he noticed we were getting ready.
• He wore a combo regular pullup under his underwear.  He had a few accidents in the pullup, but none that required a change of clothes!  He even went to the bathroom at Disney.  At the resort, he pretty consistently used the bathroom independently.
• We did not rent a stroller.  Spencer did not try to steal one.  He walked all over Disney World and didn't make us carry him once!
• He not only let me go to the bathroom by myself, he even went with Peyton & Les several times.
• He did NOT bolt ONCE.
• Spencer rode several rides.  He even pulled us all to Mexico to ride the boat ride there.
• We had an 8 hour Disney day on Sunday.  Spencer behaved like a neurotypical child.
• Daddy took Spencer and Peyton swimming at the resort Saturday and Sunday evening so Mommy could get some much needed R&R.

My favorite quotes from vacation came from Peyton.

to Spence: " I love you so much."

to me: "Gigi, Spence wants to play with me!"

There are so many more wonderful things that happened on vacation, but I think you get the idea.  When I dig out my camera cables, I'll have to post some photos.

A quick update

I'm writing this in a hurry, so bear with me.  So much to update on just two days. I'll try not to forget anything...
Friday, Spencer got to play on a space walk at school before I picked him up for our 6 1/2 hour drive to Orlando.  He was in such a good mood!  As you may or may not know, Spencer does not let me use the bathroom.  He refuses to get out of the car, and I don't feel comfortable leaving him in the car.  But that changed this trip.  We stopped at a rest stop in Florida so I could stretch.  I also realized that I needed to use the facilities.  So, I opened Spencer's door.  He willingly got out and accompanied me to the bathroom.  THIS IS HUGE!!! He even used the toilet himself.  Such a good boy!
I called the other guys when we were getting close to the resort.  They met us in the parking lot.  Spencer went with his brother out of the way of the car.  I was watching them exchanging hugs.  They were so happy to see each other.  When we got to the room, Spencer was super excited!  He was laughing and exploring the room. We then got dressed for the pool.  One pool has a pirate ship that has several small slides for the little guys.  Spencer got the hang of it rather quickly.  He would go around to the back of the ship (by himself), wait his turn and then come down the slide.  My husband and I felt bad for him because it looked like he was trying to race other children down the slides, but since he doesn't talk, he couldn't express himself.  It started getting really crowded on the pirate ship, so we decided to join Peyton at the other pool.
Peyton was playing a game with Spencer.  He would count to 3, and then they would swim (Spence to Daddy).  It was so cute!  Spencer had such a smile on his face.  He would swim to his brother.  I loved hearing Peyton tell him "I love you".  Spencer would hug and kiss him in return.  It was a wonderfully normal evening.
Saturday we ventured to the Magic Kingdom.  While Daddy was inside getting Spencer's disability pass, a parade passed by.  Spencer got up and started dancing with the music.  When it was over, he seemed so disappointed!  I wanted to take a picture of my boys.  When I got out the camera, Spencer went to the next bench and sat close to this lady sitting by herself.  Such a Romeo!
I need to wrap this up, because we are planning to hit Hollywood Studios today.  Lots more to tell, but I'll end with the best story of the day.  After riding the Buzz Lightyear ride, we ended up in the gift shop.  Spencer went and looked at the toys.  He couldn't decide between a ball or a bucket of little green men.  He grabbed the bucket, looked at me and signed "Mommy" and then "please".  So, yes we got the bucket! Peyton kept saying all day- "He was communicating!  If you weren't going to buy it for him, I would have."
More stories to come!

Where did I leave off?

I know I haven't posted in a while.  And, the more time that passes, the more I have to write and the potential to forget most of it increases.  So, I wrote down little blurbs to jog my memory.  In no order whatsoever, here is the latest scoop:

• The BEST news:  since Saturday night, Spencer has been sleeping in his own bed, in his own room. This is huge!  And, best of all, it didn't take a lot of coaxing on my part.  All that is required of me is that I sit in the den and read.  He will periodically come out of his room to make sure that I am there, and when I tell him to go back to his room, he goes!  Last night he decided he wanted to put the mattress on the floor.  Whatever!  Here is my little sweet angel :)

• My parents came this past weekend for their monthly visit.  The weather was beautiful on Saturday, so we rented a golf cart.  It was so much fun.  Best of all, Spencer was so well behaved.  He didn't try to jump out, he didn't get frustrated because we got lost (repeatedly!), he was so happy and looking around taking in his surroundings.
• It took us 2 hours to get from the rental place to McDonald's to get Spencer a treat (french fries).  My dad went in to get a few things.  When he came out with the bag, the old Spencer would have jumped out of the cart, ran across the parking lot without any concern for oncoming cars, ripped the bag out of my dad's hands and gotten his fries.  New and improved Spencer waited patiently in the cart, smiling, squealing with delight!  He sat properly and waited to be handed his fries, which he ate one by one.  

• Saturday evening, I made homemade pizza, homemade herbed breadsticks and, of course, homemade sauce.  It was a more flavorful sauce than I had been making and I wasn't sure if Spencer was going to like it.  He first ripped off the toppings (which he always does) then he ventured into dipping his finger into the sauce on the slice and licking it off his finger.  He loved it!  Yet another victory for Mommy!!
• I am always amazed at his ability to figure things out on his own.  My parents brought him some little Toy Story figures that have parachutes attached.  He figured out what you were supposed to do with them without a lot of help.  He then brought the toys into his room and played with them.  It was so cute.  A long time ago, I downloaded the Toy Story 3 memory game app to my iPhone to use to keep Spencer happy in waiting rooms, etc.  He never really played it, just looked at the pictures of the characters.  He would never let me touch the game to show him how to play it, I guess he was afraid that I was going to take it away from him.  So, imagine my surprise when I happen upon him PLAYING the game, not just turning the cards over to see the pictures!  It was adorable!  (He looked so serious, too)
• We are going on vacation for Memorial Day!  We will be meeting up with the other two boys in Orlando.  When I told Spencer that we would be seeing Daddy and Bubby in just a matter of days, he got the biggest smile on his face and said something I didn't understand and then Daddy. Awww  I figured out that we haven't seen them since the beginning of April.  Too long.
• But I think I may have gotten Spencer overly excited too soon.  After I told his about going to see Daddy and Bubby, he awoke at 2:30 in the morning, ready to roll.  Ugh.  me, I was so not ready to begin my day.  I had such a full day, I couldn't even manage to squeeze in a nap.  It will be our first vacation with Spencer's new foods, so I am cooking like a crazy woman and bringing a ton of food with me. It is not like the boys can just eat something different from Spence, because Spence will want what they have.  I had my parents bring me my Food Saver.  That is how we do fast food!!
• I am still in awe over Spencer's maintenance of his potty skills. Previously, he would go to the bathroom on schedule and he would use it if he had to go.  It became a habit.  He didn't quite 'feel' when he had to go.  It is quite a different story these days. Granted, he does have some accidents, but for the most part, he uses the bathroom on a consistent basis.  It is wonderful!!! He is so much calmer than he was a year ago.  He also is a better listener.  Just yesterday, he was in his room blaring the music.  I told him it was too loud and he lowered it.  That required a lot of cognition on his part.  I didn't specifically tell him to lower the volume.  He figured out that my complaint of it being too loud, meant that he needed to lower it.  Good job!
• He has been earning stars left and right at Brain Balance.  Yippee for my little man!  He has been tracing the letter S on the white board and doing more core exercises on the exercise ball.  I am so proud of him.  And, I am so glad we decided to pursue the Brain Balance program.  He is making such wonderful progress and the changes are lasting.
• We got together with some other Brain Balance moms and their kids yesterday for a little swim party.  It was wild!  Imagine- 4 adults; 6 Brain Balance kids; 2 neurotypical children.  We scared away anyone who was trying to relax around the pool area. Not that the kids were bad, they were loud!  We had a good time and it was good to hang out with other Brain Balance families.

Now for the decision that has been keeping me up at night. Drumroll, please.  We have decided to stay through the next school year so Spencer can have another round at Brain Balance.  We actually toyed with the idea of opening up our own Brain Balance, but the only viable location would be the Northshore.  I just couldn't make that commute for the long hours it would take to open a business and since I am not familiar with the area AT ALL, I would be at a serious disadvantage.  At this point, I am not even sure when my next visit home will be.

I am sure I forgot some stuff, I always do.  Hopefully, I will do better about the blogging.  Now I've got to start the 'cookapaloosa'.

Monday, Monday

My eye is down from a sharp pain to a dull ache.  I guess that is progress.  We play our own game of "Where's Waldo?" every morning as I try to get Spence ready for school.  However, this morning, he gave away his position.

So, I just had to tickle the toes!!  He woke up laughing and happy.  I can't help but laugh when he laughs.  Last week, a Facebook friend posted that it doesn't have to be Thanksgiving to be thankful and that he was counting his blessings.  Then another BB mom remarked after conversations on a plane, just how good she has it.  Then yesterday, they opened the Morganza spillway, saving New Orleans and Baton Rouge, but flooding other areas.  All I could think about was how insignificant my eye injury was to all of this.  I am truly blessed.  My son is not in any pain, his life expectancy is not affected, and he is loved and supported by many.  One of the unsung heroes of this journey would have to be my husband. He is busy single parenting an 11 year old and working to support what amounts to two households.  He also provides emotional support and doses of reality to his neurotic wife.  We will be celebrating our 10 year anniversary in 2012, and I hope that we are able to take a trip without the children (I'd be happy with a weekend.) But, we have goals to meet before that time.

I'm done with the heavy stuff, for now.  Spencer has been wearing clothes more often.  This is a good thing!  He used to just get dressed if he was leaving the house.  Both yesterday and Saturday, he stayed dressed for a couple of hours at a time, usually disrobing when he had to use the potty and then not getting redressed.  He also picked out his clothes and I must say, Mr. GQ did a pretty good job.  We didn't bring his trampoline, but he is making do with the bed.  I love how innocent he looks.

I am grateful we found Brain Balance.  I just love to see the changes in him and the other children.  It is not easy, but nothing worth having ever is.  And it works.  I see my son's brain changing.  THIS is my little boy!!!

I have to add this to my blog.  I have been promising Spencer that I would make him pizza for dinner since Friday.  But, since everything has to made from scratch, I just couldn't do it until last night.  he was so happy!  At one point, he took my hand, and led me to the kitchen.  He then looked into the oven window, looked at me and signed "eat".  I told him it still had about 10 more minutes to cook.  He looked at me and I swear he said "eeeee".  Then he kissed me.  Mommy then felt bad that I couldn't just pull it out of the oven right then and there!!