A little education, PLEASE!!!!!

I was scrolling through my Facebook updates and there was an article from one of the many autism groups I belong to about how to handle meltdowns.  For those of you lucky to never have experienced one of these- I must first tell you, it is UNLIKE anything your neurotypical child can dish out.  And there is a simple reason for that.  Take notes, kiddos, cause here's where the learning begins...

We are all born with primitive reflexes that are the basic necessities of survival.  With proper development, these reflexes disappear by age one.  In children such as mine, the right brain delay has caused him to retain a few of these.  The one I'm talking about now is the Moro reflex.  It is also commonly known as 'fight or flight'.  So, when my son HAD (and I will emphasize HAD) a meltdown, it was VERY hard to control.  He thought he was fighting for his life.  That's right, to him it was a matter of life or death.  I was taught (at Brain Balance, of course) to look at his eyes during these bouts.  If his pupils were extremely dilated, no amount of 'its okay, honey, please calm down' was going to work.  He was either out the door, or trying to attack anyone and everyone in sight.  I had to learn restraint techniques.  Do you know what it is like to have to put your son in what looks like a wrestling hold to protect him from himself?  And you can imagine the looks bystanders give you...

But, here comes the good part, instead of focusing ONLY on how to handle them when they happen, we need to shift the focus to eliminating them from happening at all.  Spencer has managed to lose a number of the primitive reflexes that he has held on to.  While Spencer does still meltdown, the severity and frequency have lessened.  In fact, I can't remember the last full blown meltdown.  Lately, they are more of the neurotypical child variety.  And I can handle those!

I am SO happy we took the chance on Brain Balance. It has truly changed Spencer's life.  And for that I will always be grateful.

It keeps getting better (Progress report time!!)

Our second 12 week session ends on August 12, so our 8 week progress report should have been a few weeks ago.  But things got a little (I believe this is the technical term) wonky and we had a 10 week report. Before I get to that I need to do a little update.  Monday, Spence walked out of his session with both a star AND a trophy. (Makes a momma proud.)  His star was from the sensory motor room where he participated and followed directions well.  In the cognitive room, he chose to shine!  He started playing with a chain link toy commonly used along with number cards.  So, they got out the number cards from 1- 10.  Without assistance or prompting, Spence began putting one link by the number 1, two by the number 2, etc.  THIS IS HUGE!  It means he KNOWS his numbers, not just memorized them.  Woo Hoo!!  Okay, back to the progress report...

The goal of the Pre Brain Balance program is to get the child ready for the Brain Balance program.  I am happy to report that we are almost there across the board.  In fact, for some things, Spence is already testing at Brain Balance levels!  So I don't confuse anyone (including myself) I will tell you about the changes since our last report (approx. 4 weeks ago) rather than his actual levels:

Core Stability       up 1.3 levels

Balance Beam*    up 1 level

Visual Ocular Reflexes*  up 1 level

Fine Motor*          stayed the same 

Gait                     up 1/2 level

Aerobic and Endurance      up 1.5 levels

Interactive Metronome     stayed the same

Listening Comprehension    up 1.5 levels

*= testing at Brain Balance levels

Notes from the Sensory Motor Room:

Spencer has good days and then some days he is more defiant.  His listening comprehension has gone through the roof!!  He is making choices of what he wants to complete and he is moving around the room with more independence.  I am so hopeful as he is moving through PBB levels his cognition and motor development is coming on board.  

Notes from the Cognitive Room:

Spencer is making progress in the cognitive room.  He is saying words and making animal sounds.  He is also trying to say words when requested.  "P" sound for pegs and please.  He has also moved up in his cognitive goals based on developmental age.  Exciting progress!!

I feel sorry for the director, because I kept her on the phone for over an hour to discuss Spencer's progress and the upcoming school year (and beyond).  In a perfect world, I would home school him.  But, I do not have the temperament to do so.   So, we are going to try a combination approach.  I will elaborate more on that later, after we redo Spencer's IEP.  

After we finish on August 12, we will wait three weeks then reassess Spence.  I can't wait to see the results!  I looked at Spencer's initial test results.  For MOST items, he didn't even rank. (he was below a level 1) For some, they wrote 'refused'.  (he wouldn't even try OR let them manually manipulate him to perform the task)  To go from <1 to PBB level 3 - BB level 2 is AMAZING!

Faith, hope and Brain Balance

What scares me the most

Do you know what it means to miss New Orleans?  I do.  It's crazy.  I have such a love/hate relationship with my hometown.  See, I was talking to another Brain Balance mom who can't wait to get back home and can't believe that I'm staying through another school year.  Truth be told, I'm scared of going home.  Life as it used to be will be no more.  Spencer and I have successfully removed television (with rare exceptions) from our life.  We eat a VERY restricted diet.  I don't have to travel any further than the closest grocery store to get what we need.  There are many activities around directed toward children with special needs.  I absolutely adore his teachers at school.
But New Orleans conjures up the image of the debauchery of Mardi Gras for many out of towners.  It is such a shame.  New Orleans is a city unlike any other.  You may think all New Orleanians think about is alcohol- you'd be wrong.  We are obsessed with food.  And rightfully so, we have some of the best food in the world.  Due to Spencer's dietary restrictions, I cook A LOT.  At home, I would often get a break from cooking and my husband would take over.  Now, my husband is not much of a chef.  He can make two things: 1- reservations & 2- take out orders. There will be no breaks for me, as there is no restaurant to my knowledge that even comes close to preparing food that Spence can have.  And I refuse to eat something in front of the child that he can not have.  And then it saddens me that Spence will never get to experience a big portion of the culture of New Orleans.  He will never enjoy gumbo (can't make a roux without flour), étouffée, my mother's (from my grandmother's recipe) dressing, etc.  So, it is safer to stay here.  I don't eat out, so I don't know what I am missing with any of the restaurants.
I dread the holidays.  Which, of course, center around food.  There will no more holiday baking, candy making, or cake decorating.  And I'll bet everyone will be running for the vegan chocolate chip cookies.  (They are quite good- just not like the 'real' thing.)
Another bee in my bonnet would be the lack of community support.  If there is a network in place for kids like mine, I haven't made the right contacts to find it.  Disheartening.  I go to the Kroger here and can talk to anyone in the natural foods section.  Most have autistic children.  They give me tips on where to get coupons for the stuff Spencer eats and are concerned with getting in any new items you wish. I can bring Spence to a sensory playground in Atlanta or take him for a golf cart ride when he gets too antsy.  What am I going to do when I am home?  I'm pretty sure I'd have to cross the Mississippi River to get and do ANYTHING.  It is such a shame that with as widespread an epidemic that autism is, there are areas (like New Orleans) that offer little to no resources for our kids.  So, I'll start my Google quest and my Facebook pleas.
Oh my gosh, I forgot to mention football!  A Martin family tradition is to watch football.  NFL game day preparations include the 8 foot inflatable Saints player in the yard and the family bedecked in jerseys or Saints t-shirts.  We'll eat our meals on Saints plates with Saints napkins and the table will have a Saints tablecloth.  But we are not alone.  The Saints are a HUGE part of the city.  You'll see Saints paraphenallia all over on game day. It was weird moving here (Atlanta).  In fact, the day I moved was the Saints-Falcons Monday night football game.  We were all decked out in our Saints stuff and I didn't see a single Falcon t-shirt or jersey.  In fact, in New Orleans, I doubt I've ever seen a car sticker or a t-shirt or a hat for any other NFL team but the Saints.  It's who we are.  My stepson's playroom is going to be black and gold, so he can hang his Saints posters; the adjoining bathroom already has a Saints motif.  Crazy.  To some, yeah.  To us, no.  We watch college football (Geaux LSU!!) and pro.  Usually, you'll find the whole family outside during halftime throwing the football.  (Yes, including me.) Spence is usually running around.  However, that much TV is not good.  I'm laughing because this is reminding me of a breakfast conversation I once had with Peyton about how the Saints were going to defend against the wildcat.  (By the way, he was asking for my opinion) Yeah, we take our football that seriously.
So, I guess I'll do what I always do.  Breathe, plan, implement.  I have these two rings that I wear on my right hand.  They are silver and on one is inscribed, "Nothing is impossible" on the other "Be the change you wish to see in the world"
Now is as good a time as any- watch out New Orleans.  Change is a good thing and will only enhance your already unique character.  The planning has already begun.....

I think I heard a 'click'

Wow- Spencer is starting to amaze me daily.  Tuesday, I got a call to pick up Spence from ESY.  Seems he was bleeding from the mouth and they couldn't tell where.  By the time I got there, it had stopped bleeding.  I think he bit the side of his cheek.  He wasn't in any pain, but once I was there, he was leaving with me.  It was only 10:15 when we left the school.  I had been having trouble locating his tapioca dinner rolls (bread that is gluten free and free of all his other allergens).  So, when he wanted a golf cart ride (which he indicated by handing me the golf cart keys), I decided to let him tell me where HE wanted to go.  At every intersection, I would ask him, "That way, or that way"  he would indicate which way he wanted to go by pointing.  He took us to Kroger.  Dang, that is good.  It is a little harder to navigate the golf cart paths than the street, due to the lack of signage and the fact that it all pretty much looks the same.  I thought he just took me there because he knew how to get there.  Nope, he wanted to GO there.  Hey, no problem.  They still didn't have his rolls, so I let him get a pack of (diet-approved) cookies.  I picked up a few other things.  We then ran into a friend of ours.  She and I talked for about 5 minutes or so.  Spence was so calm and patient.  When he got tired of holding his items, he put them in her basket.  She and I both laughed.  Then I held my breathe.  I saw goldfish in her basket.  Spencer LOVED goldfish before he went gluten free.  I was expecting a tantrum, or for him to grab the bags.  He did neither.  He just looked at them, and said "oooo".  That was it.  WHO IS THIS CHILD AND CAN I KEEP HIM?  Seriously, that is a major milestone.
We came home and little while later, we went to the pool area.  I brought his life jacket with me in the hopes of getting him to wear it.  He likes to go in the 5 foot area, and with me being only be 5'2", it is hard for me to help him and keep my own head above water.  But, after the debacle at the Dollywood water park, I thought there was no way this child would ever wear it.  Again, I was proven wrong.  (Never in my life have I been this happy to have been this wrong!!)  It took him a little while to get in the water, but then he brought the life jacket to me and wanted me to put it on him!!!  He then splashed around for a while.  Then he went over to the 5 foot area.  He was practicing his floating (on stomach and on back)  putting his head under, kicking and using his arms.  Whoa!  My little tadpole was back.  He got tired of having the life jacket on, so I let him take it off.  There were several other kids at the pool that day.  A couple of them wanted nothing to do with Spence, but there were two that recognized him from earlier in the summer.  Their mom is a special ed teacher somewhere in the county and they went to Spencer's school last year.  While Spencer is starting to want to play with other kids, it is usually him who follows the other kids around.  His brother is the only kid I've seen who initiates playing with him.  Well, Jacob and Ashley wanted to play with Spence.  They were so patient and kind, it was heartwarming.  Eventually, he did engage in a little playing with them.  We stayed out there for about 2 hours.  When they left, Spencer wanted to leave, too.  It was actually kind of sweet.  He didn't want to hang out if they were gone.
He was such a good boy, that I decided to make him some chocolate chip cookies as a reward.
Wednesday, when we were on our way to Brain Balance, Spencer was trying to tell me something.  His utterances were entirely different than what he usually does.  Unfortunately, I had absolutely no idea what he was trying to say.  He finally got too frustrated and stopped.
I'll post a couple of pics once I get my photos downloaded.
Happy Friday, everyone!!!

**READ ME**

Spencer had such a great day at Brain Balance yesterday.  When he emerged from his session, he was holding a trophy! (a paper trophy that gets hung on the wall at BB) There were a couple of other moms and the center director in the lobby.  We all clapped for him.  He just smiled.  Here is what was written:

Spencer SAID 'kitty-cat', 'meow', 'doggie', 'woof-woof', 'elephant', 'penguin' and he made the 'P' sound three times. Twice for 'pegs' and once for 'please'.

This is huge!!!  Could full language capabilities be right around the corner?  I sure hope so.  There are so many times we wonder what is going on in his little head, what he wants or what he is thinking.

Thank you Brain Balance.  Because of you, I am actually enjoying being with my son.  He doesn't bolt from situations he finds frustrating, he is much calmer, he is expressing real emotions...  I feel like I have my son back!!  It is wonderful to see such progress.  Nothing is impossible. (with a lot of hard work and a lot of faith)

Hope everyone has a great day, I know I will!!

Nothing, but that's something.

I've got no stories of tantrums, conflicts, etc. That in itself is a wonderful thing.  And it is not like we have been confined to the house.  Quite the contrary.  I've been taking Spence on little errands here and there.  It is so cute to be able to go the grocery store and watch him carry his favorite (dietary approved) cookies around the store!  Like he's afraid I might not get them if he puts them in the basket. Friday, we went to Rite Aid to get something for my allergies.  I thought we were going to have a problem the minute we walked in.  Outside was dark and gloomy, inside was bright.  Spence sat in the doorway shielding his eyes, paralyzed (like a deer caught in the headlights).  I scooped him up and proceeded to the allergy aisle.  By this time, his eyes had adjusted and he wanted me to put him down (my back was thankful for that!)  He didn't try to run around the store or scream or any of the other things he used to do.  He stayed pretty close by me while I read some labels.  Then it was time to checkout.  They had a small section of DVD's that we needed to pass.  Spencer was drawn to them.  He carefully flipped through the selection.  [Time for a little background.  One time at Best Buy, Spencer took all of the DVDs on an end cap and laid them out in a straight line around the aisle.  It was that or have him tantrum.  Obvious choice.  Another time, Spencer straightened out the display by making sure all the DVDs were sorted properly.  He's pretty good at matching!] I let him look, then told him we were not buying any DVDs, and he needed to c'mon.  HE DID.  No fussing, no hassle.  I was kind of stunned, in a good way.  As a general rule, Spencer watches no TV.  But, they had Thomas and Elmo.  I couldn't believe how well behaved he was.  We also made several trips to the grocery store in search of his favorite rolls, but everyone seems to be out of them.  (There seems to be a run on Tapioca Dinner Rolls- they are not THAT good)  And, he was okay with that.  He knew what we were going for, led me directly to the right aisle, and looked at the empty space.  That is the kind of thing that would have set him off just a few months ago.  He seemed to take it in stride.
He just loves his golf cart!  We hardly ever use the car on the weekends because we can get almost anywhere using the golf cart.  It takes longer, but we aren't in a hurry on the weekends.  Yesterday was a fantastic day- but it deserves a post all it's own.  Yes, it is that good!!

It's all my mom's fault!

She put a curse on me when I was younger.  I know what you are thinking.  Being from New Orleans, it must be some strange voodoo curse.  Well, you are wrong.  Your mom probably put the same curse on you. The "I hope you have a child that is just like you someday."  Yeah, THANK YOU MOM!  Some days I'm not too sure I want a neurotypical child!  Spencer has been so sassy and he just loves to lock me out.  How can a child who doesn't talk be sassy?  When I fuss at him and he is not too happy with that, he will mumble under his breath.  I recognize that tone!  I'm pretty sure that when he does start talking, he will be spending a lot of time in time out for that mouth!!
Spencer's new thing is locking doors.  He locked me out on the balcony of the resort on vacation recently.  Really bad because A) Les & Pey were not there with us; B) Les & Pey did not have keys to get back in and C) He got way too much enjoyment looking at me through the sliding glass door.  When the boys arrived back, they started knocking on the door.  Spence finally opened the door and I had to admit that I had been outsmarted by a 6 year old. (A really smart 6 year old!)
Spence has taken a little time to get readjusted to our routine.  But, he is getting back into the swing of things.  Just in time for them to change.  We only have 4 more days of ESY (extended school year) and then about 2 weeks before school starts.  He got up at 5:30 this morning, which is the time he will probably have to get up for school, but today we have nowhere to be until noon. I was looking forward to sleeping until about 7.  I guess the joke's on me!
I finally put a passcode on my iPhone.  Finally, my battery life is back to where I don't need to recharge the phone in the middle of the day!
Hopefully, it won't rain terribly hard all day.  Maybe we'll even get to do something fun!!

What a week!

Well, I haven’t blogged in a while, but that usually happens on vacation. ;)   Tuesday, we went for a hike in the Smoky Mountains and a picnic. On the way back to the resort, traffic was at a stand still.  Being the city folk that we are, we immediately assumed that there was an accident up ahead.  Boy were we wrong.  Up on the side of the mountain was a black bear.  We stopped (just like everyone else) and Pey took a couple of pictures.  Very, very cool.

Wednesday, we should have all just stayed in bed.  Yes, it was that bad.  I needed to go to the grocery because we were running low on Spencer supplies.  I hadn’t been gone long when Spencer had a fit.  He decided to throw all of my toiletries over the 3rd floor balcony.  Poor Pey was sent downstairs to try to collect everything.  Needless to say, my husband was not happy with Mr. Spencer when I returned.  We decided to go to Splash Country water park.  We didn’t have a problem until the lifeguard told us that Spencer needed a life jacket to be in the wave pool.  He is not an adventurous child and was staying where the water barely came to his knees.  Well, you would have thought that we were beating the tar out of the child.  He did not want the life jacket, but he wanted in the wave pool.  Finally, we got him in the wave pool with the jacket.  But, he was not happy.  Which means we were not happy.  I decided to take him to the lazy river, since he could do that without any external apparatus.  We ran around several times (good leg workout for Mommy!) and then Daddy joined us while Pey did some slides.  We went around a couple of times with Daddy- on a tube and calm.  I thought the day had been salvaged.  I need to not make assumptions like that anymore.  We went to the kiddie area, so Spence could do some age-appropriate and ability-appropriate slides.  He had a blast.  He didn’t like waiting his turn, but he did it.  All was well until the lifeguard told us that everyone had to get out of the pool.  I had just promised Spence that he could do the slide again and then I was pulling him away.  He totally did not understand.  Then I realized they were vacating the pool due to inclement weather and nearby lightning strikes.  He kept trying to make mad dashes to the pool.  I had him by the hand and was leading him out of the kiddie area when he plopped.  I tripped and fell over him.  When I turned back, I grabbed him and told him in no uncertain terms that we needed to go NOW.  He was trying to plop again, so I grabbed him under his arms from behind and was kind of lifting him and walking with him.  That is when it happened.  This woman got in my face and told me that I needed to calm down for the sake of my child.  Yes, I was mad at Spence, but I was more in a panic of what could come.  I could not redirect him in that area- I had to remove him from the situation in order to control it.  I certainly did not want him to become self-injurious.  Now, I had this woman to deal with.  I asked her to get out of my way and she kept stepping in front of me.  Now I was furious.  At HER.  But, she didn’t get it.  I needed to get out of there NOW!  My husband was behind me stunned.  She proceeds to follow us to where we have our stuff.  My heart was racing, adrenaline pumping.  I could not believe her nerve.  I was able to get Spence interested in his food while we packed up our stuff to leave.  Hours later, I was still reeling.  I have never had such an encounter and hope to never repeat the experience again.

Thursday, my wonderful husband suggested that I visit the spa while he took the kids to the indoor water park located at our resort.  Don’t mind if I do!  It was a relatively peaceful day, but Spence was becoming restless.  Friday, we went to Dollywood and rode a ride I never would have thought that Spence would enjoy.  The whole family got on a raft and yes, we got wet!  I think Spence got a kick out of it.  I know Peyton did, because he wanted to keep riding that ride.  We could not get Spence to go to sleep that night.  One of his front teeth was loose and he was obsessed with playing with it.  He just kept getting more and more ‘out of control’.  I decided that we would leave Saturday and return to PTC.  Between construction and traffic, it seemed to take forever.  Whew!

Now it is time to clean the apartment, do laundry (yuck!) and get back to our routine.  Hopefully, I’ll be able to post some pics soon!

From the mountains

OMG the view from our resort is just incredibly breathtaking. We came up Friday and just hung out. The adults were tired, the kids were wired. Yikes! They were so happy to see each other.

My little man has turned into a people watcher. He loves to go out on the balcony and watch all the activity below. We went to the indoor waterpark yesterday. Spence LOVED it.


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