I need to relax a bit

Well, I got to thinking today that having a special needs child really dominates my whole thought process. If Riley has a headache, there is a tiny part of my brain, that I often try to ignore, that likes to think Riley has intracranial pressure and will soon end up with hydrocephalus. It’s possible with tuberous sclerosis. But can’t Riley have a headache just because he has a simple headache? I had a headache yesterday and I don’t have tuberous sclerosis. If Riley complains of his back hurting that same traitor part of my brain jumps to the conclusion that his kidneys are failing him. Again, possible with tuberous sclerosis, but couldn’t his back just hurt because he slept on it wrong?
I also think in diagnosis terms all the time. “Oh, that is just his ADD, or his OCD, and let’s throw in a little ODD (just a little), and we can’t forget about his ASD and CAPD that causes some of his learning disabilities.” After reading another mom’s blog I realized (for the 1000th time) that some of Riley’s behaviors are very, very typical for a “normal” child. Riley can be stubborn, strong -willed, and exhibit selective hearing just like any other “normal” child.
So, I find myself dissecting his behaviors like a biologist would dissect a frog. “Is this because of this? Is that because I that?” I read too many books on disorders and I have too much fun with Psychology Today magazine. These are worlds I get though and my son is the portal.
Riley drew an amazing collage of a face, a self portrait the other day. On one piece of paper he drew a big blue eye and on another piece of paper he drew a bigger brown eye with blue eyelashes all around the eye. They were taped together on his bedroom wall and a nose and mouth were taped below it, so it looked like one giant “T”.  I was impressed; it totally could go into an art museum. (Proud mama talking.)
Here is the conversation that took place as I was making his bed the other morning.

“Riley, I love your picture! The eyes are incredible. Just curious, why is one eye brown?”

Riley bouncing his giant bouncy ball, “I don’t know mom.”

“Ok, well your eyes are blue so I was just wondering why one eye was brown and it’s so much bigger than the other with all of those eyelashes. It’s so cool. Really, why is one eye brown?”

Riley is still bouncing his ball but he’s getting mad at me for asking questions , so with a much louder and more perturbed voice he says, “just because mom!”

Well, so much for psychology 101, right? Special needs or not, I just need to relax a bit and ironically it is my son that teaches me that lesson everyday.
I still want to know why one eye is brown though!

Smiles

So, it's now 3 months post surgery and we are going NUTS!  Doctors forgot to mention a "little" thing called "behavioral changes" post surgery!!   Okay, so not complete behavioral changes but anything that Riley had going on in his head pre-surgery has been put on a stage, groomed, and the spot light is on -so to speak.   For example, Riley's ADD is off the charts.  Riley's obsessions have worsened to such a degree that, you see that adorable smiley face at the end of this page?, that smiley face is plastered on just about every wall in my house.  They are held prisoner on my fridge.  Riley's brain is stuck on this image and he won't draw anything else. 
Yes, we do see a psychologist together.  Cognitive behavioral therapy of sorts.  The Dr. said it's ok to keep the drawings up and around but my instinct is to rip them up and throw them away.  At this point I want to slap them anyway.  But we press on.  So, I encourage Riley to draw other things and then he can indulge himself with Mr. Smiley.  We looked through an art book yesterday and I asked Riley to copy one painting he liked without tracing it.  He chose the painting WOMAN MEDITATING by Alexei von Jawlensky and within 5 minutes Riley imitated Alexei's painting in a breathtaking way.  Breathtaking for his momma anyway and his big sisters gushed and praised.  The drawing was whimsical and beautiful.  Riley was very proud of himself and with "Riley, you will be an artist" dancing off of my lips he did what he does best and that was smile!  Riley then proceeded to try to rip up his "woman meditating" because I replaced his Mr. Smiley drawing on the fridge.  Well, shame on me.  After some deep breathing exercises (on my son's part) we decided to put Mr. Smiley back in it's designated spot and the "woman meditating" was banned to the side of the fridge.
Damn you Mr. Smiley!!

Maybe Tomorrow

Today was not the day I planned. 
Not the great day, relaxed day, family day, Sunday.  Sunday....that is supposed to be a day of rest, right?
Today was not the day I hoped for. 
The calm day, fly a kite day, bake cookies and enjoy day.
Today was not the day I wanted. 
It was my everyday typical day and that sure does really piss me off.
Today was not the day I prayed for. 
Not the happy day, joyous day, blessed day.
I only want that day, one day, someday. 
Soon.

Sometimes It Gets Lonely On The Playground

I have experienced normalcy to it's capacity having already seen my two daughters through their most formative years. Now teens and almost grown I reflect, perhaps too much, on my son's current elementary years.

When Riley was born he was instantly initiated into his sisters' realm of friends, playgroups, and activities.  He never even had to worry about having friends.  As the girls got older and the barbies were banished to the attic - the tea parties, make-believe forts, and all those playdate friends began to vanish. As Riley grew older his oddities and social quirkiness bloomed to it's full glory and new labels were introduced to us as casually as one would order " one caramel macchiato please", such as Autism Spectrum, ADD, Sensory Integration Disorder, OCD, and anxiety.  Oh, and let's not forget about Epilepsy which latched on to Riley when he was seven months old.  So this I get, friends can only be so understanding right?  Why does your son always hit when he's mad? Why won't Riley talk to  me? Why won't he play with me?  Well, let's see.....where to begin?   How about my son doesn't know how to play.  When all of the other kids are playing jump rope, tag, or duck duck goose ~ my son is running around aimlessly all by himself.  To add salt to wound, Riley is very verbal and high functioning so he realizes that he is all by himself on the playground and he knows that he struggles socially but he can't help himself.  Hence the frustrations and meltdowns that follow.  Riley is hardly ever invited to birthday parties or heaven forbid to a friend's house after school.  The ironic beauty of it is that this hard accepted fact doesn't bother Riley in the slightest, it only bothers me.  
Sometimes I fleetingly wish that Riley would look "different" so that people would "get" him.  I wonder if it would be easier?  Maybe people wouldn't stare at him so much when he is freaking out or having a meltdown in public.  Or clapping and singing really loud in the movie theater?  Yep, that was my kid!  My son looks perfectly "normal" and it confuses the hell out of people.  I'm used to the stares and I haven't had to bitch slap anyone yet but I will tell you frankly that the biggest offenders are other moms.  Glances of "what a brat" and darts of "wow, that mom is doing a crappy job raising her son".  I feel every silent stab.  If I could convey anything without sounding cliche, it would simply be ~ one can never be too sure.  So, the next time you see an adorable young boy about 4'9 and 115 lbs. clapping and singing in Walmart, please just smile.  And when you see that same boy in the aisle or checkout melting down faster than a ice cube on a skillet, please just nod as if you understand.  And understand this ~ going to the store (or anywhere for that matter) with a child who has a number of mental challenges takes heroine effort and strength.  One has to coach, anticipate, stay calm and distract all while trying to feed her family of 5 within budget.
Having Riley has taught me so much and I've finally reached a place where I can say my "perfect" looking boy is broken, broken in the social sense, and be ok with it.  On the inside he is fragmented, chaotic, and like one giant puzzle.  But of course it doesn't matter, Riley is and always will be a blessing. 
Most days are pretty good, fantastic, and dare I say even glorious but sometimes it does get lonely on the playground.

November 10th

Monday was the day I called and scheduled Riley's surgery.  February 21st, 2011 is the big day unless we chicken out.  I feel like I'm running through glass windows screaming.  This whole process sucks!  

Decision time

Well, we started Riley's brain  surgery evaluation this past July in Cincinnati.   Cincinnati Children's is an amazing facility.  We are so impressed.  We went back in September to finish the eval and then met with Dr. Lee and Dr. Mangano.  We even just had a conference call with Dr. Mangano, to save us a 9 hour one way trip, to answer some pretty important questions.  The Drs. figured out that Riley's seizures are all coming from the left temporal lobe.  The focal is not completely clear, however.  The Drs. speculate that the focal could be near Riley's speech and language center which could prove the surgery riskier than it needs to be.  So, Phase II has been proposed so the Drs. can put electrodes directly on the brain and monitor Riley's seizures.  They'll also map out his speech and language center while they are "in there".  We also need to try to get a Functional MRI if Riley will cooperate.  Riley is 8 but he has cognitive delays and high anxiety because of Tuberous Sclerosis. 
It's simply unfair to have to make this decision.  It requires super bionic mind power and I pray nightly for God to enter my dreams and tell me what He thinks we should do!  I think He did enter my dreams a few weeks ago as a Great Pyrenees dog. He was huge, white, beautiful and sitting on top on a hill with a glow all around him.  He was just staring at me when all of a sudden a smaller, skinny brown dog started running towards me growling.  At first I was scared but then I decided to take care of the little brown dog.  I fed him and then gave him shelter when it started to rain.  I felt so proud of myself because I made the brown dog feel safe.  I woke up saying "mijo" over and over.  I don't speak Spanish so I had to look up the meaning, well lo and behold, mijo means "my son".  Dreams can be amazing!!
We still have some people we need to talk to - like parents of other children with TS that have had brain surgery.  But, *gulp* I think we are going to proceed.  The thought of Riley being seizure free overwhelms me with hope and joy that is so often fleeting in our world of TS.